Establishing and Enhancing Services
for Childhood Cancer Survivors
LONG-TERM FOLLOW-UP PROGRAMRESOURCE GUIDEChildren’s Oncology Group Nursing Discipline
Clinical Practice Subcommittee/Survivorshipin collaboration with the Late Effects Committee

Establishing and Enhancing Services for Childhood Cancer Survivors:
Long-Term Follow-Up Program Resource Guide
Children’s Oncology Group Nursing Discipline
Clinical Practice Subcommittee/Survivorshipin collaboration with the Late Effects Committee
Editor: Wendy Landier

Copyright 2007 © Children’s Oncology GroupAll rights reserved worldwide
The Children’s Oncology Group grants permission to download Establishing and
Enhancing Services for Childhood Cancer Survivors: Long-Term Follow-Up Program
Resource Guide (including associated Appendices) from www.childrensoncologygroup.org
or www.survivorshipguidelines.org and to print copies for individual and institutional use,
as long as the following conditions are met: (1) Copies are not sold or distributed forcommercial advantage, and (2) the Children's Oncology Group copyright and its dateappear on the printed copies.
DISCLAIMER: Every effort has been exerted to ensure that information contained in thisreference is in accord with current recommendations and practice at the time of thispublication. Though every effort has been made to ensure accuracy, the Children's
Oncology Group and its affiliated organizations and member institutions disclaims all
responsibility for any errors or omissions contained herein.

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Establishing and Enhancing Services for Childhood Cancer Survivors

LTFU PROGRAM RESOURCE GUIDEEDITOR
Wendy Landier, RN, MSN, CPNP, CPON®
Chair, Survivorship Section, COG Nursing Clinical Practice Subcommittee
Clinical Director, Center for Cancer Survivorship
City of Hope National Medical Center, Duarte, California

SECTION EDITORS
Scott Hawkins, LMSW
Pediatric Oncology Social Worker
Helen DeVos Children’s Hospital, Grand Rapids, Michigan

Marcia Leonard, RN, PNP
Coordinator, Late Effects Program, C.S. Mott Children’s Hospital
University of Michigan, Ann Arbor, Michigan

Kathleen Meeske, RN, PhD
Assistant Professor, Keck School of Medicine, University of Southern California
Director, Health Outcomes and Cancer Control Research
HOPE Program, Childrens Center for Cancer and Blood Diseases
Childrens Hospital Los Angeles, Los Angeles, California

Susan Shannon, RN, MSN, CPNP, CPON®
Coordinator, “STAR” Late Effects Program
Miller Children’s Hospital, Long Beach, California

Aimee Sznewajs RN, MS, PNP
Survivorship Program Coordinator
UCSF Children’s Hospital, San Francisco, California

COG LATE EFFECTS COMMITTEE
Smita Bhatia, MD, MPH
Chair, Late Effects Committee, Children’s Oncology Group
Professor and Chair, Division of Population Sciences
City of Hope National Medical Center, Duarte, California

Kevin Oeffinger, MD
Project Liaison, COG Late Effects Committee
Director, Adult Survivor Program
Memorial Sloan-Kettering Cancer Center, New York, New Yorkiii

LTFU Program Resource Guide

CONTRIBUTORSElaine Arbez, RN
Cancer Care Manitoba
Winnipeg, Manitoba, Canada
Lisa Bashore, RN, MS, CPNP, CPON®
Life After Cancer Program
Cook Children’s Medical Center
Forth Worth, TX
Susan Bock, RN, MSN, CPNP
University of Wisconsin –Gundersen Lutheran
La Crosse, WI
Theresa Carbone, RN, MS, CPNP, FNP
Long-Term Follow-Up Clinic
Roswell Park Cancer Institute
Buffalo, NY
Clarita Carino, RN
Newark Beth Israel Medical Center
Newark, NJ
Claire Carlson, RN, BSN
Cancer Survivorship Program
The Children’s Hospital of Philadelphia
Philadelphia, PA
Jacqueline Casillas, MD
Director, Life After Cancer Clinic
UCLA Medical Center
Los Angeles, CA
Hope Ann Castoria, RN
LTFU Program CoordinatorHackensack University Medical Center
Hackensack, NJ
Cindy Cochran, RN, MSN, PNP
UT Southwestern Medical Center
Children’s Medical Center - Dallas
Dallas, TX
Rose Dunaway, RN, CPON®
University of North Carolina
Chapel Hill, NC

Debra Eshelman, RN, MSN, CPNP
After the Cancer Experience ProgramChildren’s Medical Center - Dallas
Dallas, TX
John Gates, MDChildren’s Hospital Central California
Madera, CA
Kristi Geib, PNP
University of North Carolina
Chapel Hill, NC
Erin Hartnett, RN, PNP
New York University Medical Center
New York, NY
Jeanne Harvey, RN, MS, PNP
Washington University Medical Center
St. Louis, MO
Katharine Johnston, RN, APRN-BC, PNP
Columbus Children’s Hospital
Columbus, OH
Karen Kinahan, RN, MS
STAR Late Effects Program
Northwestern Univ. Medical Center
Chicago, IL
Kathy Martin, RN, CPNP
Carolinas Medical Center
Charlotte, NC
Rebecca Martin, RN, MSN, ARNPMD Anderson Cancer Center
Orlando, FLCharlene Maxen, RN, CNP, CPON®
Akron Children’s Hospital
Akron, OH
Barbara Mathis, RN, MSN, FNP, CPON®
Newark Beth Israel Medical Center
Newark, NJ

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LTFU Program Resource Guide

CONTRIBUTORSSal McKeel, RN
Christus Santa Rosa Children’s Hospital
San Antonio, TX
Ann P. McKenzie, RN, NP
St. Christopher’s Hospital for Children
Philadelphia, PA
Jill Meredith, RN, BSN, OCN®
Driscoll Children’s Hospital
Corpus Christi, TX
Revonda Mosher, RN, MSN, CPNP, CPON®
Sinai Hospital of Baltimore
Baltimore, MD
Katy Murphy, RN
Long-Term Follow-Up Clinic
Children’s Hospital of Wisconsin
Milwaukee, WI
Kirsten Ness, PT, PhD
St. Jude Children’s Research Hospital
Memphis, TN
Josee Pacifico, RN, BSc (N)McGill University/
Montreal Children’s Hospital
Montreal, Quebec, Canada
Amy Pasmann, RN
Primary Children’s Medical Center
Salt Lake City, UT

Linda Rivard, RN
POST Program
Advocate Hope Children’s Hospital
Oak Lawn, IL
Sheila Santacroce, APRN, CPNP, PhD
School of Nursing and HEROS Program
Yale University
New Haven, CT
Susan Shaw, RN, MS, PNP
Kids Now Off Therapy Clinic
SUNY Upstate Medical University
Syracuse, NY
Pamela Smith, RN, NP
West Virginia University
Charleston, WV
Johanne Soucy, RN, B.Sc.N
McGill University/
Montreal Children’s Hospital
Montreal, Quebec, Canada
Teresa Sweeney, RN, MSN, CPNP
After Completion of Therapy Clinic
St. Jude Children’s Research Hospital
Memphis, TN
Genevieve Sylvain, RN
HOPE Clinic
The Children’s Hospital
Denver, CO

Angie Pemberton
Children’s Oncology Group
Patient Advocacy Committee
Jefferson City, MOv

LTFU Program Resource Guide

REVIEWERS
LaVette Bowles, RN, FNP
UCLA Mattel Children's Hospital
Los Angeles, CA
Erin Hartnett, RN, MSN, CPNPNYU Medical Center
New York, NY
Barbara Lockart, RN, MSN, CPNPSTAR ProgramChildren's Memorial Hospital
Chicago, IL
Mary Baron Nelson, RN, MS, CPNP, CPON®
Childrens Hospital Los Angeles
Los Angeles, CA
Kathleen Ruccione, RN, MPH, FAAN, CPON®
Chair, Nursing Discipline, Children's Oncology GroupChildren's Hospital Los Angeles, Los Angeles, CA
Associate Professor of Clinical Pediatrics, Keck School of Medicine, USC
Janet Veatch, RN, MN, CNS
Veatch Solutions
San Francisco, CA
Karla Wilson, RN, MSN, FNP-C, CPON®
Nurse Practitioner, Childhood Cancer Survivorship Program
City of Hope National Medical Center
Duarte, CA
Terri Wolf, RN, BSN
Pediatric Oncology Program
Sutter Medical Center
Sacramento, CAvi

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TABLE OF CONTENTSFOREWORD…………………………………………………………………………………… x
INTRODUCTION………………………………………………………………………………. xii
SECTION 1: FOUNDATIONS FOR LONG-TERM FOLLOW-UP………………………... 1
THE IMPORTANCE OF LONG-TERM FOLLOW-UP………………………………… 2
Late Effects after Childhood Cancer……………………………………………….. 3
Research: Key to Determining Risks of Late Effects…………………………….. 4
Key Role of Nurse Practitioners in Long-Term Follow-Up...…………………….. 5
Long-Term Follow-Up Care………………………………......…………………….. 6
Resources for Long-Term Follow-Up Programs.………......…………………….. 7
MODELS OF LONG-TERM FOLLOW-UP CARE………………………………..…… 8
Determining the Model of Care…………………………………………………….. 8
Choosing a Model: Considerations…………………..…………………………….. 8
Cancer Center Models………………………………………...…………………….. 9
Community-Based Models.………………………………......…………………….. 10
Need-Based Models………………………………………......…………………….. 10
Advantages/Disadvantages of Models…………………………………………….. 11
TRANSITION ISSUES……………………………...………………………………..……13
Phase I: Transition to Long-Term Follow-Up………………………………………13
Phase II: Transition to Adult Healthcare……………………………………………13
CHALLENGES/BARRIERS……………………….………………………………..…… 14
Knowledge Deficits – Survivors…………………………………………………….. 14
Knowledge Deficits – Healthcare Professionals………………………………….. 14
Psychological Factors Affecting Follow-Up Care………………………………….14
Healthcare System Issues………………………………………………………….. 15
Financial/Insurance Issues…………………………………………………………..15
Overcoming the Barriers/Challenges in Survivorship Care………….………….. 15
Barriers to Risk-Based Healthcare…..…………………………………………….. 16
SECTION 2: PROGRAM DEVELOPMENT………………………………………………... 17
INITIAL CONSIDERATIONS…………………………..………………………………… 18
Determining Program Goals…………………………………….………………….. 18
Assessing Institutional Needs…………………….…………….………………….. 18
Assessing Resources………...………………………………….………………….. 18
Identifying, Recruiting and Retaining Patients……………………………………. 19
Assessing Patient Needs…………………………………………………………….19
DETERMINING PROGRAM PARAMETERS………..………………………………… 20
Initiation of Long-Term Follow-Up Care………….…………….………………….. 20
Transition from Acute Care to Long-Term Follow-Up……….……………….….. 20
Age Range/Age Limits………………………………….……….……………….….. 20
General versus Specialized Long-Term Follow-Up………….……………….….. 21
Determining Frequency of Clinic Visits…………….………….……………….….. 21
Transition to the Adult Healthcare System………...………….……………….…..22
Resources for Assisting Patients with Healthcare Transitions..…………….….. 22vii

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BUILDING A MULTIDISCIPLINARY TEAM..………..…………………………………23
PROGRAM FUNDING………………………...………..…………………………………24
Sources of Funding………………………………………………...…………….….. 24
Potential Sources of Funding Assistance…………………….....…………….….. 25
What Works?...........................................…………………….....…………….….. 25
Third Party Payors…………………………………………………………………… 26
Listservs………………………………………………………………………………. 26
PROGRAM MARKETING.…………………...………..………………………………… 27
SECTION 3: DELIVERING LONG-TERM FOLLOW-UP CARE……………………….... 28
CLINIC OPERATIONS……..…………………………..………………………………… 29
Care Delivery Methods…….…………………………………….………………….. 29
Clinic Staff…………….…….…………………………………….………………….. 29
Pediatric Nurse Practitioners: Scope of Practice…………………………………. 31
Clinic Space…………………………………………………………………………...32
Schedules...…………………………………………………………………………... 32
Clinical Databases…………………………………………………………………... 33
Forms and Supplies…………………………………………………………………. 33
PREPARING FOR THE CLINIC VISIT...……………..………………………………… 34
Medical Record Review…………….……………………………………………….. 34
Medical Record Issues..…………………………………………………………….. 34
Screening Recommendations..…………………………………………………….. 34
Team Meetings………...…………………………………………………………….. 35
Preparing the Treatment Summary.……………………………………………….. 36
STRUCTURING THE CLINIC VISIT...………………..………………………………… 37
POST CLINIC FOLLOW-UP………....………………..………………………………… 38
Tracking Results/Information……………………………………………………….. 38
Making Referrals…………….………………………………………………………..38
Summarizing the Visit……………………………………………………………….. 39
Standardizing Documentation..…………………………………………………….. 39
Managing Ongoing Communication……………………………………………….. 39
Patients Lost to Follow-Up………………………………………………………….. 40
BILLING AND FINANCIAL ISSUES...………………..…………………………………41
Coding/Billing……………..………………………………………………………….. 41
Reimbursement Issues…..………………………………………………………….. 42
Reimbursement for NPs…………………………………………………………….. 42
SECTION 4: SURVIVORSHIP RESEARCH……………………...………………………... 43
CANCER SURVIVORSHIP RESEARCH...…………..………………………………… 44
IDENTIFYING RESEARCH PRIORITIES..…………..………………………………… 46
Research Focus………..……………………………………………………………..46
Feasibility……...………..……………………………………………………………..46
Research Team………..…………………………………………………………….. 46
Regulatory Issues……..…………………………………………………………….. 46

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CONDUCTING SURVIVORSHIP RESEARCH.……..………………………………… 47
Clinical Databases Set the Stage for Cancer Survivorship Research...……….. 47
Developing a Clinical Database...………………………………………………….. 47
Regulatory Issues………………...…………………………………………………..49
Research Opportunities within COG…………………………………...………….. 50
Currently Open COG Late Effects Studies.…………………………...………….. 50
The Research Process……………...…………………………………...…………..51
Development of a Research Project…………………………………...………….. 53
Examples of Potential Funding Sources for Survivorship Research..…………..54
Other Research Considerations………………………………………...…………..55
Building Research Partnerships………………………………………...…………..55
SECTION 5: ISSUES IN SURVIVORSHIP….….………………...………………………... 57
ADVOCACY………………………………....…………..………………………………… 58
Developing Advocacy Skills……………………………………….……………….. 58
Essential Skills……………………...……………………………….……………….. 58
Advocacy: What, Why, How?...…...……………………………….………………..58
Parents and Patient Advocates…...……………………………….………………..59
Common Survivorship Issues..…...……………………………….……………….. 60
Information and Resources for Survivors..……………………….……………….. 63
EDUCATIONAL ISSUES……..…………....…………..…………………………………65
Educational Assessment and Planning.………………………….……………….. 65
Educational Interventions……………….………………………….……………….. 65
Legal Issues……………………………...………………………….……………….. 66
Special Education Advocacy…………...………………………….……………….. 66
EMPLOYMENT ISSUES……..…………....…………..………………………………… 67
Vocational/Career Choice Considerations……………………….……………….. 67
Legal Issues Related to Employment…….……………………….………………..67
INSURANCE ISSUES……..……….……....…………..………………………………… 70
Obtaining Insurance………………………..……………………….……………….. 70
Legal Issues Related to Insurance…………….………………….……………….. 71
REFERENCES………………………………….….………………...………………………... 72
APPENDIX 1: COG RESOURCES.………….….………………...………………………... 74
APPENDIX 2: INSTITUTE OF MEDICINE RECOMMENDATIONS……………………...94
APPENDIX 3: SAMPLE FORMS AND LETTERS.……………...………………………....98ix

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FOREWORD
any of us trace the roots of our hospitals’ survivorship and transition programs back 25 to 30
years to the pioneering influence of individuals we worked with in the legacy cooperative groups(CCG and POG).1, 2 I remember that in the 1970’s, as treatment advances led to prolonged
remissions in children with acute lymphoblastic leukemia, a new question arose: how long should
maintenance therapy be given? Because part of the answer to that question depended on thepotential long-term adverse effects of treatment and because reports of late effects wereappearing in the literature, the first long-term follow-up protocol in the CCG (CCG-101L) was
opened in 1980.3 Participating institutions like mine needed to coordinate the evaluations requiredby the study (i.e., neuropsychologic testing, gonadal evaluation, ophthalmologic evaluation,
thyroid evaluation, physical examination, reporting of any second tumor, history of inpatient
hospitalizations). For many of us, that was our first foray into the world of establishing services
for childhood cancer survivors. The experience showed us the importance of comprehensive lateeffects evaluations, and emphasized the difficulty of incorporating this type of follow-up care into
routine outpatient off-therapy visits. In that sense, CCG-101L opened a Pandora’s box of issues
related to the workforce, resources, and systems needed to implement long-term follow-up care.4
Meanwhile, the population of survivors continued to grow, and a heterogeneous group of longterm follow up programs using diverse homegrown models developed in response. Those of us
who shared an interest in survivorship and transition eagerly sought each other out to compare
experiences. We kept an eye on the literature, networked at conferences, and consulted eachother by telephone and later by email and listservs. But we didn’t have (and would have given
our “eyeteeth” for) the practical assistance for developing and sustaining a long-term follow up
program that’s available between the covers of this Resource Guide.
There is no question that pediatric health care providers have led the way in survivorship care,education, and research. A partial list of milestones would include recognition of the incidence
and impact of late effects among cancer survivors, dissemination of information and guidelines forfollow up care, development of survivor “passports” in various formats, and publication of healtheducation materials for survivors. Yet, despite a growing library of articles, books, and reports, aswell as media attention to survivorship after cancer treatment, until now there has been no single
guide to help interested health professionals and their institutions develop and enhance long-term
follow-up services. This Resource Guide meets that need and represents one more milestone insurvivorship care by pediatric oncology thought leaders and clinical experts.
For me, one of the special joys of working in pediatric oncology has been that colleagues far andwide always have been so willing to share their knowledge, insights, and experience. With theadvent of the Children’s Oncology Group in 2000 and the collaboration of the COG Late Effects
Committee and the Nursing Discipline, a critical mass of shared survivorship expertise coalesced.
I hope that you will join me in gratitude for all the individuals involved in this collaborative effort
who generously contributed their time and survivorship savvy to put this much-needed Resource
Guide at your fingertips, and that you will find it very helpful in your practice.
Kathleen Ruccione, MPH, RN, FAAN, CPON®
COG Nursing Discipline Chairx

LTFU Program Resource Guide

FOREWORD
he last three decades have seen tremendous improvements in survival of children diagnosed
with cancer, with the 5-year survival rate approaching 80%. This improvement in survival has
resulted in a growing population of childhood cancer survivors. Use of cancer therapy at an early
age can produce complications that may not become apparent until years later. Approximately
two-thirds of the survivors of childhood cancer will experience at least one late effect, and about
one-third will experience a late effect that is severe or life-threatening. Even more important is theobservation that the risk of developing these long-term complications does not appear to plateau
with time, hence the emphasis on long-term follow-up of childhood cancer survivors.
An especially high-risk population, childhood cancer survivors seek and receive care from a wide
variety of health care professionals, including oncologists, medical and pediatric specialists,surgeons, primary care physicians, gynecologists, nurses, psychologists and social workers.5
Providing appropriate health care for survivors of cancer is emerging as one of the major
challenges in medicine. The challenge arises from the heterogeneity of this patient population
treated with numerous therapeutic modalities in an era of rapidly advancing understanding of lateeffects. The Institute of Medicine has recognized the need for a systematic plan for lifelong
surveillance that incorporates risks based on therapeutic exposures, genetic predisposition,
health-related behaviors, and comorbid health conditions. Optimal healthcare delivery to thisunique population requires the establishment of necessary infrastructure, including several key
components:6 (1) longitudinal care utilizing a comprehensive multidisciplinary team approach, (2)continuity, with a single healthcare provider coordinating needed services, and (3) an emphasison the whole person, with sensitivity to the cancer experience and its impact on the entire family.
Academic settings allow for establishment of a specialized multidisciplinary follow-up team to care
for large numbers of survivors; however, the paucity of such centers and their limited geographic
access make these specialized centers an option only for survivors who live nearby or who canafford time and expenses in order to travel to a distant center. Until now, there have been noresources available that describe the process of developing a long-term follow-up clinic.
Therefore, the development of a resource to help institutions provide the necessary follow-up in acomprehensive yet standardized fashion has been a priority of the Children’s Oncology Group.
The Children’s Oncology Group’s Long-Term Follow-Up Resource Guide is an outstanding andmuch-needed review of the entire process required to establish the necessary infrastructure inorder to conduct long-term follow-up by interested institutions. The material included in the
Resource Guide represents the expertise of individuals who have successfully established such
centers at their institutions, and therefore captures a wealth of experience from experts who havedemonstrated successful execution of this endeavor at the local level. The text is practical andhence readily applicable across a variety of institutional settings and patient demographics.
Finally, this piece of work, led by the COG Nursing Committee, with review and input from theLate Effects Committee, represents the consensus of national experts in this field, and is truly asuccess story in terms of how the total effects of such collaborative efforts equal greater than thesum of individual pieces. I believe that this landmark effort will greatly benefit institutions
interested in initiating survivorship programs, and most importantly, will provide childhood cancer
survivors with the standard of care that they deserve.
Smita Bhatia, MD, MPH
COG Late Effects Committee Chairxi

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INTRODUCTIONs more and more children survive
childhood cancer, late and sometimes
serioustherapy-related
complications
continue to emerge. Ongoing care for longterm survivors is thus being recognized as
an essential part of the cancer care
continuum. Developing and implementing along-term follow-up (LTFU) program forchildhood cancer survivors can bechallenging. It can also be deeply rewarding.
In order to support the development of suchprograms, the Children’s Oncology Group
Nursing Discipline’s Clinical Practice Subcommittee - Survivorship Section embarked
on a collaborative effort with the Late Effects
Committee to develop this practical guide.
Under the leadership of a core group of
dedicated editors, over 50 individuals
participated in the development of this guidein order to provide a broad perspective
reflecting a wealth of experience from avariety of LTFU programs affiliated withChildren's Oncology Group institutions.
Whether you are planning to establish a new
LTFU program or to enhance an existing
program, we are hopeful that you will findthe information in this Resource Guide
helpful.
This Resource Guide is organized in fivesections, as follows:
1. Foundations for Long-Term Follow-Up:
This section serves as an introduction thatwill assist those without a pediatric oncology
or late effects background (such as hospitaladministrators or potential program donors)
to understand the importance of LTFU forchildhood cancer survivors. It can be used
to provide justification as to why a LTFU
program should be established (or why an
existing program should be enhanced), andincludesbasic
information
regardingprogram organization and design, caredelivery methods, transition issues, andchallenges/barriers to delivering survivorshipcare. This section is intentionally written at
an introductory level so that those without aclinical background will easily be able tounderstand the issues discussed.
2. Program Development:This section is targeted to both healthcare
professionals and administrators. Issues
important in developing a long-term followup program are defined and discussed, andthe reader is provided with information toassist in weighing options and setting
parameters for a LTFU program that best
meets the needs of individual institutions.
3. Delivering Long-Term Follow-Up Care:
This section provides the "nuts-and-bolts" of
how to organize and run a long-term followup clinic (including clinic operations,preparation for clinic visits and post-clinic
follow-up). It is designed for use byhealthcare professionals who will be directly
involved in planning and delivering care in
the clinic. The information may also be
useful for administrators and others who will
be supporting clinic operations.
4. Survivorship Research:
This section describes methods forincorporating multidisciplinary survivorshipresearch into LTFU programs.
Topicsinclude identification of research priorities,
database development, regulatory issues,
and research opportunities, including
development of research partnerships andparticipation in Children's Oncology Groupand other collaborative studies.
5. Issues in Survivorship:
Common psychosocial, educational, andlegal issues facing survivors (such asproblems with employment or insurance,
and the importance of advocacy skills) are
discussed in the context of how these issues
affect the services required by survivors in
LTFU programs.

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Appendices:
The appendices provide a wealth ofresources available through the Children's
Oncology Group and their affiliatedinstitutions.
Appendix 1 is a guide to several Children's
Oncology Group (COG) resources thatspecifically address the long-term follow-up
needs of childhood cancer survivors. It
includes a sample from the COG Long-Term
Follow-Up
Guidelines
forChildhood,
Adolescent, and Young Adult Cancers, asample patient education guide (Health Link)
targeted to a specific guideline-related topic,
copies of COG's Summary of Cancer
Treatment templates (comprehensive andabbreviated versions), information about theLate Effects Web Forum (a web-based
discussion board open to COG members),
and information about the Late Effects
Directory of Services (a web-based directoryof LTFU programs at COG institutions).
Appendix 2 provides a summary of theInstitute of Medicine's recommendations for
improving care and quality of life inchildhood cancer survivors, and includes
commentary regarding progress that has
been made since the release of the reportand ongoing challenges in survivorship care.

Appendix 3 provides a generous sample offorms and letters used by established LTFU
programs in their day-to-day operations,
including clinical summary forms, annual
questionnaires, history and physical forms,
patient education checklists, forms for
tracking test results, and assessment forms
for use by multidisciplinary team members(such as social work, psychology, andnutrition). Sample patient appointment
letters, insurance authorization letters, andfollow-up letters to referring physicians arealso included. Sincere gratitude isexpressed to the institutions that generously
agreed to share their sample forms andletters for inclusion in this Resource Guide.
We hope that the materials contained within
this Resource Guide will be useful to you inyour practice, and that as a result, you too
will be able to establish or enhance a longterm follow-up program for childhood cancer
survivors. We wish you well as you embark
on this very worthwhile endeavor.
- Wendy Landier, Editor“The cancer experience is a process that extends throughout alifetime, a looking glass through which all future health andillness behaviors of the survivor must be interpreted. . . .”- Oeffinger, 20036

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Section 1: Foundations for LTFUSECTION 1:
FOUNDATIONS FOR LONG-TERM FOLLOW-UPEDITOR:
Susan Shannon, RN, MSN, CPNP, CPON®
Coordinator, “STAR” Late Effects Program
Miller Children’s Hospital, Long Beach, California

1Section 1: Foundations for LTFU

THE IMPORTANCE OF
LONG-TERM FOLLOW-UP
Imagine being cured of a life-threatening childhood cancer only to discover that long-term healthproblems may develop as a result of the very treatments that cured the cancer. Such is the casefor the estimated 270,000 childhood cancer survivors living in the United States today. . . .
When Ian was nine years old, he was diagnosed with medulloblastoma, a malignant brain
tumor. Curative therapy required treatment with surgery, chemotherapy and radiation.
Prior to his diagnosis, Ian was a healthy, bright boy who was active in sports. After his
diagnosis and treatment, Ian struggled with balance, coordination, and gastrointestinal
problems. When Ian completed all of his treatment, he was able to return to the fourth
grade, but he was thin and frail, and he required a wheelchair to help him get around anda tutor to help him learn. Keeping up with schoolwork was difficult, and balance andcoordination continued to be an issue, particularly during physical education classes.
Fortunately, Ian is cured of his brain tumor. Despite his many challenges, withperseverance and hard work, he has managed to complete high school and recently
graduated from a community college with a culinary arts degree. His love of cooking
developed out of the necessity to overcome appetite loss associated with his treatment.
Today, Ian continues to struggle with other effects related to his treatment, including
cognitive deficits, short stature, hearing loss, hypothyroidism, thyroid nodules, andthinning of the hair, all of which are life-long challenges. He also remains at risk for
additional problems such as osteoporosis, cataracts, kidney problems, hormone
deficiencies, and second cancers.

ver the last three decades, survival
rates for childhood cancer have improved
dramatically, resulting in a large populationof childhood cancer survivors. Today, withthe help of chemotherapy, radiation,
surgery, and improved supportive care,nearly 80% of children treated for cancer will
become long-term (at least five year)
survivors.5 With approximately 20,000
children in the United States diagnosed
each year with cancer, the number ofindividuals cured of cancer will continue togrow by more than 15,000 each year.7

As survival rates improved over the last
several decades and children with cancer
reached the second and third decades oflife, it became increasingly clear that cure
had not come without a price. Researchers
confirmed that survivors were at risk for a
multitude of chronic or late-occurring healthproblems caused by their cancer or its
treatment, often referred to as “late effects.”
Late effects can affect a survivor’s physical,
cognitive, and psychosocial health, andsurvivors remain at risk for developing manyof these late effects over time.

2Section 1: Foundations for LTFU

Late Effects After Childhood Cancer
Treatment for childhood cancer can have alasting effect on the brain, eyes, ears, lungs,
heart, liver, gastrointestinal tract, kidneys,
and bladder, as well as the skeletal,
reproductive and endocrine systems.
Survivors may face many challenges, suchas learning and memory difficulties, anxiety,depression,
hearing
loss,
cardiacdysfunction, cataracts, obesity, thyroid
problems, infertility, and other medical
problems, including second cancers. The
risk of late complications depends on thesurvivor’s diagnosis and the specifictreatment that they received.
Adversehealth behaviors, such as smoking, drinking,and poor diet or exercise habits, may
magnify the risk of developing some of thesecomplications. Survivors may also face
problems related to attaining their desired
level of education, finding and holding a job,assuming expected societal roles, and otherfactors that can affect their quality of life.
Survivors at highest risk for late effects
include patients treated for bone tumors,
central nervous system tumors, and Hodgkin
lymphoma.
Survivors treated for bone
cancer commonly experience disfigurement
and functional limitations caused by
amputations or other surgeries. Additionalrisks for these patients may include
problems with fertility, heart and kidney
dysfunction, and second cancers related toradiation and/or chemotherapy.
Somepatients treated for Hodgkin lymphoma
experience lung damage, abnormal skeletal

growth and maturation, infertility, or
hypothyroidism, and girls who received
chest radiation are at increased risk ofdeveloping breast cancer. Young people
with brain tumors are often the most
severely affected, particularly if theyreceived radiation and chemotherapy inaddition to surgical removal of their tumor.
Potential late effects for this group are
numerous and include cognitive impairment,
short stature, hearing loss, problems withbalance and coordination, hypothyroidism,
thyroid nodules, kidney damage and second
cancers.
In addition to the many physical late effects
that may develop in survivors of childhood
cancer, there are also a host of psychosocial
issues that may emerge. Long-term
educational,social,behavioral,
andvocational difficulties are all common.
Furthermore, survivors may face barriers
related to obtaining ongoing medical care,
support, and surveillance for late effects;
these services are critical to their efforts toattain optimal health. Obtaining gainful
employment with adequate insurance
coverage is crucial but often difficult,particularly for survivors who have cognitive
impairments. Some survivors may not beable to obtain health or life insurance or may
be forced to pay high insurance premiums
because of their cancer history. Still othersurvivors may not be able to complete
school or even minimal job training, placing
the burden of care on their families andsociety.

A recent report compared the health status of 10,397 survivors ofchildhood cancer treated from 1970 to 1987 with 3,034 of theirsiblings. Among the survivors, 62% had at least one chronic healthcondition, and 27% had a serious or life-threatening condition, suchas stroke, heart disease, or kidney failure. Survivors were 54 times
more likely to have a major joint replacement, 15 times more likely tohave congestive heart failure or to develop a second cancer and 10
times more at risk for cognitive problems than their siblings. In fact,
only about one in three survivors remained free of long-term
problems related to their cancer diagnosis or treatment.
- Oeffinger et al. 2006 8
3

Section 1: Foundations for LTFU

Research is Key to Determining Risks of
Late Effects in Pediatric Oncology
Pediatric oncologists have long recognized the risk of late-occurring complications in childhood
cancer survivors. The Late Effects Study Group, an international consortium of pediatric cancer
centers, was organized in the early 1970s to track delayed complications in childhood cancer
survivors. Led initially by Giulio D’Angio, MD and later by Anna Meadows, MD, the research
conducted by this group established the relationship between many therapeutic exposures used
for curative therapy in childhood cancer and the late toxicities associated with those exposures.
The National Wilms Tumor Study Group (NTWS), the Pediatric Oncology Group (POG) and theChildren’s Cancer Group (CCG) have all made significant contributions in identifying latecomplication related to childhood cancer therapy. Today, this work continues to be carried out by
the Children’s Oncology Group (COG) and by researchers worldwide. Some of the key
publications in the childhood cancer survivorship research literature to date include: Meadows AT, D'Angio GJ. Late effects of cancer treatment: methods and techniques for
detection. Semin Oncol. 1974 Mar;1(1):87-90.
 Proceedings of the National Cancer Institute Conference on the Delayed Consequencesof Cancer Therapy. Proven and Potential. Cancer 1976; 37:999-1936.
 Li FP, Stone R. Survivors of cancer in childhood. Ann Intern Med. 1976 May;84(5):551-3
 Meadows AT, D'Angio GJ, Mike V, Banfi A, Harris C, Jenkin RD, Schwartz A. Patternsof second malignant neoplasms in children. Cancer. 1977 Oct;40(4 Suppl):1903-11.
 Goorin AM, Borow KM, Goldman A, Williams RG, Henderson IC, Sallan SE, Cohen H,
Jaffe N. Congestive heart failure due to adriamycin cardiotoxicity: its natural history inchildren. Cancer. 1981 Jun 15;47(12):2810-6.
 Meadows AT, Gordon J, Massari DJ, Littman P, Fergusson J, Moss K. Declines in IQ
scores and cognitive dysfunctions in children with acute lymphocytic leukaemia
treated with cranial irradiation. Lancet. 1981 Nov 7;2(8254):1015-8.
 Ochs J, Mulhern RK. Late effects of antileukemic treatment. Pediatr Clin North Am. 1988
Aug;35(4):815-33.
 Green DM, Donckerwolcke R, Evans AE, D’Angio GJ. Late effects of treatment for
Wilms tumor. Hematol Oncol Clin North Am. 1995 Dec;9(6):1317-27.
 Bhatia S, Robison LL, Oberlin O, Greenberg M, Bunin G, Fossati-Bellani F, Meadows
AT. Breast cancer and other second neoplasms after childhood Hodgkin's disease. N
Engl J Med. 1996 Mar 21;334(12):745-51.
 Kadan-Lottick NS, Robison LL, Gurney JG, Neglia JP, Yasui Y, Hayashi R, Hudson M,
Greenberg M, Mertens AC. Childhood cancer survivors' knowledge about their pastdiagnosis and treatment: Childhood Cancer Survivor Study. JAMA. 2002 Apr
10;287(14):1832-9.
 Pui CH, Cheng C, Leung W, Rai SN, Rivera GK, Sandlund JT, Ribeiro RC, Relling MV,
Kun LE, Evans WE, Hudson MM. Extended follow-up of long-term survivors ofchildhood acute lymphoblastic leukemia. N Engl J Med. 2003 Aug 14;349(7):640-9.
 Oeffinger KC, Mertens AC, Sklar CA, Kawashima T, Hudson MM, Meadows AT,
Friedman DL, Marina N, Hobbie W, Kadan-Lottick NS, Schwartz CL, Leisenring W,
Robison LL; Childhood Cancer Survivor Study. Chronic health conditions in adultsurvivors of childhood cancer. N Engl J Med. 2006 Oct 12;355(15):1572-82.

4Section 1: Foundations for LTFUThe Key Role of Nurse Practitioners in
Development of Long-Term Follow-Up Programs
Advance practice nurses forged their role in the long-term follow-up of childhood cancer survivors
shortly after the need for continued care of this vulnerable population was identified. The role of
the Pediatric Nurse Practitioner (PNP) specializing in the care of children with cancer had its
beginnings in 1965 at St. Jude Children’s Research Hospital (SJCRH). At that time, PNPs
received on-the-job training provided by the SJCRH medical director. The St. Jude program
served as the inspiration for the PNP/O program developed by Jean Fergusson in Philadelphia in
the 1970s. As much of the medical literature on late effects was published by Dr. D’Angio and Dr.
Meadows, both from the Children’s Hospital of Philadelphia (CHOP), assessing patients for latesequelae of treatment became an integral component of the Philadelphia PNP/O program.
The earliest nursing papers on the subject provide descriptions of “late effects” and guidance fornurses regarding how best to provide care for childhood cancer survivors. June McCalla at the
National Cancer Institute and Jean Fergusson at CHOP contributed some of the first papers.
Numerous other nurse authors (listed below) contributed to the description and development of
the role of the NP in caring for childhood cancer survivors. Wendy Hobbie from CHOP has
published widely on the topic, providing concrete theory, practical guidance and role definition,emphasizing the many-faceted components of advanced practice nursing in long-term follow-up
care, including clinician/caregiver, educator, and researcher.
 Greene PE, Fergusson JH. Nursing care in childhood cancer: late effects of therapy. Am
J Nurs. 1982;82(3):443-6.
 Ruccione K, Fergusson J. Late effects of childhood cancer and its treatment. Oncol Nurs
Forum. 1984;11(5):54-64.
 McCalla JL. A multidisciplinary approach to identification and remedial intervention foradverse late effects of cancer therapy. Nurs Clin North Am. 1985;20(1):117-30.
 Leonard MA, Waskerwitz MJ. Late effects in adolescent survivors of childhood cancer.
Semin Oncol Nurs. 1986; 2(2) 126-132.
 Fergusson J, Ruccione K, Hobbie WL. The effects of the treatment for cancer in childhoodon growth and development. J Assoc Pediatr Oncol Nurs. 1986;3(4):13-21.
 Hobbie WL. The role of the pediatric oncology nurse specialist in a follow-up clinic forlong-term survivors of childhood cancer. J Assoc Pediatr Oncol Nur. 1986;3(4):9-12,24.
 Fergusson J, Ruccione K, Waskerwitz M, Perin G, Diserens D, Nesbit M, Hammond GD.
Time required to assess children for the late effects of treatment. A report from theChildrens Cancer Study Group. Cancer Nurs. 1987;10(6):300-10.
 Hobbie WL, Hollen PJ. Pediatric nurse practitioners specializing with survivors ofchildhood cancer. J Pediatr Health Care. 1993;7(1):24-30.
 Harvey J, Hobbie WL, Shaw S, Bottomley S. Providing quality care in childhood cancer
survivorship: learning from the past, looking to the future. J Pediatr Oncol Nurs
1999;16(3):115-6.
 Landier W, Bhatia S, Eshelman DA, Forte KJ, Sweeney T, Hester AL et al. Developmentof risk-based guidelines for pediatric cancer survivors: the Children’s Oncology Group
Long-Term Follow-Up Guidelines from the Children’s Oncology Group Late Effects
Committee and Nursing Discipline. J Clin Oncol. 2004;22(24):4979-90.
 Ginsberg JP, Hobbie WL, Carlson CA, Meadows AT. Delivering long-term follow-up care
to pediatric cancer survivors: transitional care issues. Pediatr Blood Cancer.
2006;46(2):169-73.

5Section 1: Foundations for LTFU

Long-Term Follow-Up Care
Long-term follow-up programs and services
are essential in order to address the uniqueneeds of the growing population ofchildhood cancer survivors as theynavigate the challenges of today’s
healthcare system.
Prevention and/or
early identification of complications are
crucial in order to decrease the long-term
health risks associated with curative
treatment for childhood cancer. Althoughmany long-term follow-up programs alreadyexist, additional comprehensive, accessible
services are needed to accommodate thisever-growing population of young people
who are being cured of cancer.
Key services provided by LTFU programs
should include: Monitoring for and managing physicallate effects
 Providing health education to survivors
regarding their diagnoses, treatment
exposures, and potential late effects
 Providing referrals to specialists andresources as indicated Encouraging wellness and healthpromotion activities
 Addressing psychosocial needs ofsurvivors and affected family members
 Assessing and providing intervention for
educational and/or vocational needs
 Assisting with financial and insurance
issues Guiding transition from pediatric toadult-focused healthcare Empowering survivors to advocate for
their own healthcare needs
 Facilitating survivorship research
Survivors often lack knowledge regarding
their cancer diagnosis, treatment, andpotential risks for developing late effects.9
Long-term follow-up programs can addressthese needs by providing survivors withinformation regarding their long-term healthrisks. Because the risk for many late effects
increases over time and will likely be

exacerbated by co-morbidities related to theaging process, the importance of providing
ongoing LTFU care for this population isclear. This necessity prompted the Instituteof Medicine (IOM) to release a reportdetailing steps for improving care and qualityof life for survivors of childhood cancer5 (seeAppendix 2, which includes comments
regarding the progress that has been madesince the report’s release, and a discussionof ongoing challenges in survivorship care).
The IOM report recognizes the need for riskbased lifelong healthcare integrating thecancer survivorship experience with thesurvivor's overall healthcare needs.10 Eachsurvivor’s plan for lifelong screening andprevention should incorporate risks basedon previous cancer history, treatment,
genetic predisposition, lifestyle behaviors,and co-existing medical conditions, with anemphasis on surveillance for late effects,
health promotion, and education regarding
risk reduction.
Resources are now becoming available toguide LTFU care for childhood cancer
survivors. The Children’s Oncology Group(COG) has developed Long-term Follow-up
Guidelines for Survivors of Childhood,
Adolescent, and Young Adult Cancers11(www.survivorshipguidelines.org).
These
risk-based, exposure-related guidelines
provide recommendations to direct follow-up
care in this unique population. Patient
education materials to complement theseguidelines, known as “Health Links,” havealso been developed by COG in order toenhance LTFU care and health promotion
for childhood cancer survivors.
It is essential that survivors receive
appropriate education and screening so thatlate effects can be recognized at theirearliest, most treatable stage. LTFU
programs, whether large or small, can be
instrumental in providing these muchneeded follow-up services to childhood
cancer survivors.

6

Section 1: Foundations for LTFU

Resources for Long-Term Follow-Up Programs
Textbooks:
 Schwartz CL, Hobbie WL, Constine LS, Ruccione KS (Editors): Survivorsof Childhood and Adolescent Cancer: A Multidisciplinary Approach.
Heidelberg: Springer, 2005.
 Wallace WHB, Green DM (Editors): Late Effects of Childhood Cancer.
London: Arnold, 2004.

Institute of Medicine Report:
 Hewitt ME, Weiner SL, Simone JV (Editors): Childhood Cancer
Survivorship: Improving Care and Quality of Life. Washington, DC: The
National Academies Press, 2003.

Clinical Guidelines: Children’s Oncology Group Long-Term Follow-Up Guidelines for Survivorsof Childhood, Adolescent, and Young Adult Cancers. Children’s Oncology
Group. Version 2.0, 2006. Available: www.survivorshipguidelines.org.

Patient Education Materials:
 Keene N, Hobbie W, Ruccione K: Childhood Cancer Survivors: A Practical
Guide to Your Future (2nd Edition). Sebastopol, CA, O’Reilly Media, Inc.,
2007. (Currently available free of charge to “needy” patients at the following
web address: www.candlelighters.org/Book_Order_Form.pdf)
 Children’s Oncology Group Health Links, 2006.
Available: www.survivorshipguidelines.org“A young woman cured of Acute Lymphoblastic Leukemia was having
academic difficulties at the college level. Her father recognized that her
scholastic challenges were related to her therapy, which had included
cranial irradiation. This gentleman led the way to educate key medical
personnel and the leadership of our parent organization about late effects
of childhood cancer treatment and the importance of an organized programfor follow-up and intervention…..It was our parent organization, ‘Parents
Against Cancer’ which was instrumental in generating the funds needed tocreate our program.”- Jerry Z. Finklestein, MD
Pediatric Hematologist/Oncologist
Miller Children’s Hospital, Long Beach, CA
7Section 1: Foundations for LTFU

MODELS OF LONG-TERM FOLLOW-UP CARE
aring for the rapidly growing populationof childhood cancer survivors requires both
flexibility and creativity. Survivors represent
a heterogeneous population with a wide
range of diagnoses and treatment
exposures, and the intensity of necessary
follow-up varies from patient to patient.
Survivorship care also requires a variety of
approaches to meet the changing needs ofsurvivors as they move through the lifespan,from childhood to adolescence and then into
adulthood.

Choosing a Model: Considerations
How many survivors will be cared forin your institution’s program?

How large is the geographic
catchment area that your institution
serves?



Is it convenient for patients tocontinue to return to your institution?

How diverse is your survivor
population (types of cancer diagnoses
and treatment exposures)?



Will the majority of patients seen by
your institution have had minimaltreatment exposures, or will you havemore complex patients with
exposures that place them at greaterrisk for the development of lateeffects?



What resources (physical, personnel,
financial) are available to yourinstitution?

Determining the Model of Care
There are a variety of models for delivering
care to survivors, all of which have distinct
advantages and disadvantages12.
The
model best suited for your institution
depends in large part on the population ofsurvivors served and the resources available
in your facility. It can also be argued thatthe best model may vary from patient topatient, with those with the most complex
treatment histories and at-risk treatment
exposures requiring a more specialized levelof care. Many survivors are thriving; theircancer treatment may have had little longterm impact on their current health status
and specialized LTFU care in an oncology
setting or specialized late effects clinic may
not be a high priority in their lives. For othersurvivors with chronic health conditions orincreased potential for treatment relatedsequelae, ongoing care is an integral part oftheir survivorship experience. Regardlessof where the survivors from your institution
fall on this continuum, all survivors require
education about their health risks andongoing screening for potential late effects
that may occur as they age.
No matter what model is chosen,an educated survivor who is empowered
to be an active participant in their own
life-long care is the cornerstone of all
successful survivorship care.

Finding a model for delivering LTFU carethat works best for both your facility andyour patient population requires carefulconsideration, with a focus on maximizing
available resources to address the coregoals of survivorship care in any setting.
Practitioners have developed a variety ofmethods to address the healthcare needs ofchildhood cancer survivors.
The keydifferences in these approaches lie in thephysical location for care delivery and thetype of healthcare practitioner who provides
care, recognizing that the pediatric cancer
center is not the only place suitable for
LTFU.
With the proper infrastructure fortransition and education for healthcare
providers, survivors can receive LTFU carethroughout their lifespan, provided by a wide
range of practitioners including oncologists,
nurse practitioners, internists, and family
practice physicians.

8Section 1: Foundations for LTFU

Cancer Center Models
Primary Oncology Care:In this model, patients continue to see theirtreating oncologist in the oncology clinic.
Although this model is often the most
comfortable for the patient who has
developed a relationship and a level of trustwith the treating physician, the focus may
remain on disease surveillance rather thanthe potential for late effects and associatedopportunities for health promotion.
Specialized LTFU Clinic:
This is probably the most common model for
long-term follow-up, and the number offormal LTFU programs in COG is increasing
each year. Examples include: Survivors ofChildhood Cancer Clinic at UCSF Children’s
Hospital, the Perini Clinic at Dana Farber
Cancer Institute, the After Completion of
Therapy (ACT) Clinic at St. Jude Children’s
Research Hospital, the Survivorship Clinic at
City of Hope, the Long-Term Follow-Up
Program at Memorial Sloan Kettering
Cancer Center, and the Cancer Survivorship
Program at The Children’s Hospital ofPhiladelphia.
The specialized LTFU program model
involves transitioning the patient from theprimary oncologist to a specialized LTFU
team within the same cancer center,typically when the patient has been off
active therapy for at least two years. The
team provides expertise in the long-term
effects of therapy and has a healthpromotion/wellness focus. This type of clinic
is designed to examine and evaluate thepatient as well as to provide risk-based
screening recommendations and education
about potential late effects. Periodic (often
yearly) evaluations continue in this clinic forvarying amounts of time. In some programs,
the team provides support for transitioning
the patient to adult-focused care; otherprograms follow patients for life. The patientis encouraged to establish an ongoing
relationship with a community healthcare
provider for routine healthcare needs.

Shared Care:In this model, a clinician specializing in
LTFU is “embedded” within a specialized
program (e.g., leukemia/ lymphoma, solid
tumor) within the cancer center and directs
the LTFU care for these patients.
An
example of this model is the LIFE Program(Long-Term Information, Follow-Up and
Evaluation Program) at Childrens Hospital
Los Angeles.
Young Adult Transition Models
Formalized Transition Programs:
Many pediatric institutions have upper age
limits for care, recognizing that older
survivors may not be able to receive
appropriate care in a pediatric setting andthat their needs may be better served in an
adult-focusedhealthcare
environment.
Some pediatric academic institutions havesuccessfully developed formal programs foryoung adult survivors in partnership withneighboring adult institutions. Examples
include the ACE (After the Cancer
Experience) Program for Young Adult
Survivors (a partnership between Dallas
Children’s Medical Center and the
University of Texas Southwestern), Living
Well After Cancer (LWAC) Program at the
Hospital of the University of Pennsylvania (apartnership between The Children’s Hospital of Philadelphia and the University ofPennsylvania) and the STAR Program(Survivors Taking Action and Responsibility), a partnership between Children’sMemorial Hospital and Northwestern
University in Chicago. These clinics may be
staffed by pediatric and/or adult oncology
practitioners or with family practice orinternal medicine physicians or nurse
practitioners whose focus and expertise are
the care of the pediatric oncology survivor.
Patients are seen solely by thesepractitioners, and multidisciplinary referrals
to other subspecialties are made on an asneeded basis, often to an establishednetwork of adult providers with knowledgeof the specific needs and risks of this patient
population.

9Section 1: Foundations for LTFU

Adult Oncology-Directed Care:
Another option for transitioning young adultpatients is to refer them to an adult oncologist for LTFU. However, once minimal riskfor disease recurrence has been identified,care is frequently transitioned to a primarycare provider in the community.
Community-Based Models
Community-Based Care:
Armed with the appropriate knowledge oflate effects related to childhood cancer
treatment, pediatric and adult primary carepractitioners can successfully provide LTFU
care to survivors.
In this model, thepediatrician, family practice physician,advanced practice nurse, or internist in thecommunity provides LTFU care.
Ideally,
the community provider maintains close
contact with the pediatric oncology teamthat provides, on a consultative basis,
explanations regarding the patient's risk
factors and updates regarding changes inscreening recommendations. This model
can be useful for both pediatric patients andfor transitioning young adult survivors tocommunity-based care.
One example is
the ACT Clinic at St. Jude Children's
Research Hospital, which has beensuccessful in helping survivors make thetransition to community healthcare providers
when the survivor reaches 10 years off
therapy and is at least 18 years of age.

Need-Based Models
In the United Kingdom, models based on
intensity of treatment are being explored to
guide decisions about type and frequency oflong-term follow-up for pediatric cancer
survivors. Three levels of follow-up carehave been proposed by Eiser et al.13 andinclude: (1) “Level 1” follow-up by mail or
telephone every 1 to 2 years for patients
who had only surgical treatment or “low-risk”
chemotherapy, such as Stage I or II Wilms
tumor or germ cell tumors treated withsurgery alone; (2) “Level 2” follow-up by
nurse or primary care provider every 1 to 2
years for patients who received chemotherapy alone or chemotherapy with lowdose (<24 Gy) cranial irradiation, such as
those with A.L.L. in first remission; and (3)“Level 3” follow-up in a medically supervised
late effects clinic annually for patients who
received any radiation (with the exception of
low-dose cranial irradiation), and for patients
who received “megatherapy,” such as
patients with stage IV tumors, brain tumors,or those who underwent bone marrowtransplant.
Several models for providing care tochildhood cancer survivors are summarizedin Table 1, which includes advantages anddisadvantages of each model.

“At our institution, we started to get phone calls from our long term survivors who wereno longer seeing their primary oncologist. Through websites and conversations withother survivors, patients and parents had heard about special programs just forsurvivors, and wondered if this sort of program existed at our hospital. Initially, we werereferring patients to other facilities or to practitioners in the community. But then our
Division started to wonder if we could and should be doing better.
Was this a missed opportunity and, more importantly, was there a way that we could
improve the care we were offering to our long-term survivors? These kinds of questions
led us to pull together a think tank of oncologists, nurse practitioners and administrators. . .we started to answer the questions: Who are our survivors? Where are they now?
What do they need? We aren’t the biggest facility in the area, but our pool of survivors
was larger than we expected. We considered a partnership with another local children’s
hospital and with a family practice physician with interest in long term survivors. Before
we knew it, we were taking the first steps to developing our monthly long term follow-up
clinic, and laying the groundwork for a transition program for our young adults.”- University Hospital Program Administrator

10Section 1: Foundations for LTFU

Table I: Models of Care: Advantages and Disadvantages of Various Types
MODEL
CANCER CENTER:
Primary Oncology Care
LTFU occurs as continuation of ontherapy experience with treating
oncologist in pediatric oncology clinic

CANCER CENTER:
Specialized LTFU Clinic
LTFU handled by a designated lateeffects team in a separate clinic withinor outside of the pediatric oncology
clinic setting

CANCER CENTER:
Shared Care
Care provided within a specialized
cancer center program (e.g., Neurooncology; Leukemia/Lymphoma);
LTFU clinician directs LTFU aspectsof careYOUNG ADULT TRANSITION:
Formalized Transition Program
Follow-up in a specialized clinic
staffed by adult oncologist/nurse
practitioner or family practicephysicians/nurse practitioners withexpertise in late effects of therapy;
often in a partnership between treating
pediatric institution and adult-focusedacademic setting

ADVANTAGESDISADVANTAGES Comfortable for patients and family
who have developed relationshipwith treating oncologist
 Continuity of care
 Oncologists don’t feel they have to“give up” their patients to anotherprovider Provider attention may be
distracted by acuity of on-therapy
patients
 Illness (not wellness) focus
 Potential lack of provider interest inor knowledge of late effects
 Relapse-focused follow-up rather
than risk-adapted screening andhealth promotion focus
 Research may be difficult tocoordinate Providers with expertise in lateeffects
 Emphasis on improving survivor
knowledge of cancer treatment andrisk Comprehensive risk-based
screening and follow-up care Continued connection with cancer
center provides “comfort zone” forsurvivor
 Focus on modifiable risk factors
 Health education
 Opportunity to train healthcare
professionals
 Access to established network of
sub-specialists with commitment tosurvivor care
 Structure for research Cancer center may have negative
connotations for survivors whowant to “move on”
 Survivors may not feel comfortablein pediatric setting as they getolder May not be geographicallyconvenient May discourage survivor use of
primary care
 Protects patient from having tonegotiate their own healthcare in
the community Requires multiple hospital
resources Lack of familiarity and expertise ofpediatric team with adult issues
that arise as survivor enters
adulthood Patient benefits from combined
expertise of primary treatment teamand late effects specialist Structure promotes opportunities
for research and training ofhealthcare professionals
 Continued connection withtreatment team and clinic setting
provides “comfort zone” for survivor
 Allows for continuity of care andease of communications between
oncologist and LTFU clinician
 Provides smooth transition

 May discourage use of primarycare provider (PCP) Requires substantial hospital
resources and dedicated clinicians
as survivor population grows
 Protects patient from having tonegotiate their own healthcare

 Pediatric providers facilitate smoothtransition to adult program Collaborative approach to care
 Established relationship withpediatric provider makes transition
more comfortable for survivor
 Multidisciplinary approach withaccess to adult-focused specialists
as needed Rich environment for ongoing
research with young adults
survivors as they age; ability toaccess ongoing studies at treating
institution

 Not designed to provide primarycare services
 May not always be geographicallyconvenient for survivors as they
age and become more
independent/transient

11Section 1: Foundations for LTFU

Table I: Models of Care (continued)
MODEL
YOUNG ADULT TRANSITION:
Adult Oncology-Directed Care
Adult oncologist in the cancer centeror community provides LTFU care

COMMUNITY-BASED CARE:
The pediatrician, family practicephysician, advanced practice nurse, orinternist within the community handles
LTFU

ADVANTAGESDISADVANTAGES Specialized oncology-focused care
 May be more convenient for patient(if in local community) Provider attention may be
distracted by acuity of on-therapy
patients
 Illness (not wellness) focus
 Potential lack of provider interest inor knowledge of late effects
 Relapse-focused follow-up rather
than risk-adapted screening andhealth promotion focus
 Research may be difficult tocoordinate Promotes independence andreintegrates survivor into primarycare Limited provider knowledge andtraining regarding late effects andrisk-based screening (particularly
relevant for survivors with moresignificant exposures) Wellness focus
 Convenience for survivor

 Provider may lack time to devote tocomplex physical and psychosocial
needs of survivors
 Lack of sub-specialist resources
with survivorship expertise Requires survivor to know risks
and advocate for their own needs
 Difficult to coordinate research Difficult to update survivors
regarding new information as it
becomes available

COMBINED APPROACH:(Consultative Model)
Initial follow-up in cancer center-based
program with transition to communitybased PCP; ongoing interaction withcancer center as needed or at requestof PCP Allows for partnership between
oncologist and primary careprovider Cancer center is always available
as a resource Difficult to keep PCPs up-to-dateon new information as it becomes
available Access to cancer center network of
specialists

 Initial transition may be difficult forsurvivor Enhances local provider knowledgeof late effects

 May not be well-suited for survivors
with more complex follow-up
requirements

 Encourages PCP utilization of
published screening guidelines forsurvivors
NEED-BASED CARE:
Type and intensity (“level”) of followup care determined by intensity ofcancer treatment that survivor
received

 PCP not an expert on childhood
cancer late effects or issues

 Potential loss of patient for
research initiatives

 Allows for more equitable
distribution of healthcare resources(survivors with greatest needreceive most intensive follow-up
care) PCP not an expert on childhood
cancer late effects or issues

 May be more convenient for lowerrisk survivors (follow-up for mostsurvivors is by mail, phone, or with
PCP in local community) Survivors triaged to lower levels ofcare do not receive care from lateeffects expertise Difficult to keep PCPs up-to-dateon new information as it becomes
available

 Encourages involvement of primarycare providers in long-term followup
 Promotes continued contact withpatients, potentially enhancing
research efforts
Based on data from references 12, 13, and 14

12

Section 1: Foundations for LTFU

TRANSITION ISSUES
o optimize the health and quality of life ofchildhood cancer survivors, it is important todevelop a systematic plan of care that
continues beyond the childhood years. To
achieve ongoing care, two phases oftransition are key (see Table 2).
Phase I: Transition to LTFU
Following completion of cancer treatment,
patients enter an initial phase of follow-up
care, which focuses on surveillance fordisease recurrence. Following completion ofthis initial phase of follow-up, patients should
transition from disease-focused care to
survivorship-focused care, where theemphasis is now placed on risk-based
screening and health promotion.
When and where the transition tosurvivorship-focused care takes place,which patients are followed, and what
services are offered in the LTFU program
varies from one institution to the next. Thereis no one ideal model. Factors that may
affect the planning for and implementation ofsurvivorshipcare
programs
includeinstitutional commitment, finances, andresources.15
In general, most centersprovide follow-up care to all survivors, butsome may also have specialized programsfor specific patient groups, such as brain
tumor survivors. Common services provided
include physical exams, risk-based lateeffects screening, education and counselingregarding late effects and health promotion,and referrals to specialists and community
resources. The setting in which LTFU caretakes place may also vary, but common
settings include children’s hospitals, cancer
centers, or academic medical centers.

Phase II: Transition to Adult Healthcare
An additional transition occurs when thesurvivor moves from pediatric LTFU care toadult-oriented healthcare. This transition
phase is a necessary component of most(but not all) LTFU programs. Whether or not
this phase of transition needs to occur
depends largely on the type and scope ofthe facility providing follow-up care.
Transition to adult healthcare occurs at adevelopmentally important time, as thesurvivor moves from a pediatric setting
where responsibility for care lies with theparent, to an adult setting in which thesurvivor assumes primary responsibility for
their own care. This type of transition canbe particularly challenging, because it
generally requires locating, educating andcommunicating with appropriate healthcare
providers in an adult-focused facility or in thecommunity, and some of these providers
may have little knowledge or expertise in thecare of childhood cancer survivors. Ideally,
this phase of transition should incorporate
some overlap between the pediatric andadult provider in order to allow for a smoothtransition of care, and to allow for the parent
and young adult to become comfortable with
the new healthcare provider. Addressing
the transition process well in advance of its
occurrence is essential in order to equip thesurvivor and family with knowledge andskills that will allow them to advocate for
their own healthcare by the time of thistransition. Additional information regarding
the transition to adult healthcare is included
in Sections 2 and 5.

Table 2: Key Aspects of Transitions in Survivorship Care
TRANSITION FROM ACUTE CARE TO LTFU

TRANSITION FROM PEDIATRIC TO ADULT CARE

 Transition time points may vary between institutions

 Occurs as adolescents and young adults “age out” ofpediatric healthcare system
 Preparation of survivor and family assists in successfultransition
 May cause mixed emotions while transitioning fromfamiliar to unfamiliar setting Emphasis on risk-based screening and health promotion
 May caused mixed emotions (e.g., excitement versus
anxiety) about leaving trusted staff who were involved intreatment and visiting the clinic less frequently

13Section 1: Foundations for LTFU

CHALLENGES/BARRIERSTO DELIVERING SURVIVORSHIP CARE
here are numerous barriers that canmake survivorship care a challenge,
includingknowledge
deficits
amongsurvivors9 and healthcare professionals16,
psychosocial issues17, and the complexitiesof the healthcare system18, 19. Common
barriers are highlighted below:
Knowledge Deficits - Survivors
 Many asymptomatic survivors do notrealize the importance of ongoing cancerrelated follow-up care

 PCPs may lack experience and expertisein managing childhood cancer survivors
with complex healthcare needs
 There may be limited local resources toassist the PCP in providing follow-up
care for childhood cancer survivors
 There may be deficits in communication
between pediatric cancer centers andprimary healthcare providers regarding
follow-up care and late effects issues.
Interventions for Knowledge Deficits

 Survivors who are unaware of actual or
potential late effects are unlikely to seek
appropriate cancer-related healthcare or
advocate for their personal healthcareneeds Develop regional educational programsfor healthcare professionals to increaseawareness of survivorship issues

Interventions for Knowledge Deficits

 Provide funding incentives to assist withestablishment of specialty programs Communicate a plan for follow-up care to
the patient/family early (while the patientis still receiving therapy)
 Inform survivors regarding their cancer
diagnosis, treatment history, and risk ofdeveloping late effects
 Present information at an agedevelopmentally-appropriate levelor Provide ongoing education as thesurvivor matures and assumes more
independence Keep survivors up-to-date regarding
available resources, such as the COG
Long-Term Follow-Up Guidelines, COG
Health Links, and Childhood Cancer
Survivors: A Practical Guide to Your
Future (N. Keene, W. Hobbie & K.
Ruccione Eds, O’Reilly Media, 2007)
Knowledge Deficits - Professionals
 Primary care providers (PCPs) may be
unfamiliar with the ongoing healthcare
needs of childhood cancer survivors,
including cancer-related health risks,
screening guidelines, and risk-reduction
methods

 Advocate for development of survivorshipprograms

 Establish programs to train healthcare
professionals and promote expertise insurvivorship care
 Use technology (e.g., the Internet) to
distribute survivorship resources andinformation to healthcare professionals inreadily-accessible
anduser-friendly
formats
Psychological Factors Affecting Care
 Fear or anxiety of another cancer
diagnosis, or of being diagnosed with aserious late effect of cancer treatment
 Desire to leave cancer diagnosis in thepast Avoidance of follow-up care due tounresolved feelings related to cancer
diagnosis and treatment during childhood
Interventions for Psychological Factors
 Introduce the concept of long-term followup to the patient/family before treatment
is completed
 Allow sufficient time for the survivor to
become familiar with the process of14

Section 1: Foundations for LTFU

LTFU and totransitions in care

anticipate

plannedemployment, which may result in difficulty
obtaining health insurance Encourage survivors to be proactive intheir healthcare and to adopt healthy
lifestyle behaviors in order to minimize
additional risk factors

 A diagnosis of childhood cancer may beconsidered a pre-existing condition, thus
it may be difficult for a survivor to acquire
health insurance

Healthcare System Issues

 Survivors may “age-out” of private or
public insurance coverage Lack of standardization in delivering
cancer-related healthcare to childhood
cancer survivors
 Pediatric health systems are often familyoriented, while adult healthcare isdirected at the individual and requires
independence and self-advocacy skills inorder to attain required care successfully Survivors may have limited knowledge orexperience in navigating the complex
healthcare delivery system
 Some survivors may lack the cognitive
ability and skills to deal with thecomplexities of the adult healthcare
system Distance to a specialized follow-up center
may be prohibitive The transition from childhood to young
adulthood accentuates common barriers
to healthcare (e.g., lack of knowledge,
financial issues, etc.), making compliancewith ongoing cancer-related healthcare
particularly challenging.
Interventions for Healthcare System
 Explore the feasibility of satellite clinics toservice remote areas
 Develop outreach programs to assist
community providers in providing care
 Initiate the transition process early Provide patients/families with education
regarding the transition process
Financial/Insurance Issues
 Survivors with multiple or complex lateeffects may be unemployed, and thus
unable to obtain insurance coverage
 Young adults are more geographicallymobile with respect to school and Survivors who have insurance may facerestriction of coverage with regard toproviders and/or screening tests
 Outright cost of healthcare is often
prohibitive for uninsured survivors
Interventions for Financial/Insurance Provide survivors with information
regarding government programs for
adults with special needs and/or disabled
adults Develop a directory of community
resources and referrals for survivors
 Provide survivors with access topersonnel with expertise in financial andinsurance issues
Overcoming Barriers/Challenges in LTFU
Late effects programs are in a uniqueposition to minimize some of the barriers forchildhood cancer survivors in obtaining
appropriate healthcare, both by providing
this healthcare and serving as a resource forsurvivors and the healthcare community.
Education of the survivor and the healthcarecommunity about the importance of LTFU
care is also a critical responsibility of lateeffects programs. In addition to providing
essential education, late effects programs
can provide information about community
resources
andassistsurvivorsinovercoming barriers related to financial/
insurance issues and psychological factors,
and they can promote self-care andindependence in the young adult population.
Ideally, childhood cancer survivors and theirfamilies will receive education regarding theneed for long-term follow-up care throughout
the continuum of care. Once survivors

15

Section 1: Foundations for LTFU

formally enter into a LTFU program,education is an integral component of theprocess. Gradually, the educational focus
regarding potential late effects and theimportance of continued follow-up should
transition from the parent to the maturingchild, in preparation for the survivor's entry

into the adult healthcare system. As young
adults, survivors should see themselves as
their own advocates in obtaining necessary
services in order to continue their LTFU
care. Barriers to risk-based healthcare andmethods to help facilitate the transition
process are summarized in Table 3.

Table 3: Barriers to Risk-Based Healthcare in Childhood Cancer Survivors
FIRST TRANSITION PERIOD:SECOND TRANSITION PERIOD:FROM ACUTE CANCER CARE
TO LONG-TERM FOLLOW-UP (LTFU) PROGRAM

FROM LTFU PROGRAM
TO YOUNG ADULT CAREBARRIERS:BARRIERS: Lack of adequate number of LTFU programs Survivor-specific barriers:− Lack of understanding or knowledge of risks− Fear of transitioning Fear of continued care
 Financial or distance constraints
 Lack of understanding of the need for continued
surveillance Healthcare professional-specific barriers:− Few programs for young adult survivors− Community healthcare physicians unfamiliar withthe risks and problems of the population− Lack of communication between cancer center andcommunity physicians Medical system-specific barriers:− Difficulty finding affordable insurance, especially forsurvivors in rural settings or self-employed survivors− Limitations on medical insurance coverage of somescreening tests in young adults− Restrictions of managed care organizations

METHODS TO FACILITATE TRANSITION:

METHODS TO FACILITATE TRANSITION: Clearly explain the purpose of risk-based care

 Survivor in a LTFU program:− Develop a policy for the process of transition− Identify qualified and committed healthcare
providers− Involve the survivor and the family in the process− Assess the expectations and healthcare beliefs ofthe survivor and the family− Emphasize the goals of risk-based healthcare− Highlight the importance of the survivor/family as
the key providers of healthcare information− Focus on the survivor as self-advocate− Stress the ongoing communication between the
LTFU team and new providers− Discuss the transfer of medical records and theoncology medical summary Discuss long-term plans for follow-up through thesurvivor continuum Address emotional issues of survivorship Provide a summary of the cancer diagnosis andtreatment Educate regarding risks and methods to reduce risk
 Foster self-care practices
 Promote positive decision-making skills for healthy
lifestyles

 Survivors in general (and not in a LTFU program):− LTFU community as activists for survivorship− Raise public awareness− Educate insurance companies and managed careorganizations− Communicate with state and federal legislators
From: Oeffinger KC and Eshelman DA “Transition Issues” in Schwartz CL, Hobbie WL, Constine LS, Ruccione KS (eds.),
Survivors of Childhood and Adolescent Cancer: A Multidisciplinary Approach, Heidelberg: Springer, 2005. Used with kindpermission of Springer Science and Business Media.

16Section 2: Program Development

SECTION 2:
PROGRAM DEVELOPMENTEDITOR:
Aimee Sznewajs, RN, MS, PNP
Survivors of Childhood Cancer Program Coordinator
UCSF Children’s Hospital, San Francisco, California

17Section 2: Program Development

INITIAL CONSIDERATIONS
here are multiple factors to consider
when developing or evaluating a LTFU
program for survivors of childhood cancer.
These include (1) determining program
goals, (2) assessing institutional needs, (3)assessing patient needs, and (4) patient
identification and recruitment.
Determining Program Goals
Planning for a LTFU program begins with aclear delineation of goals. These may vary
based on institutional, community andpatient needs, and may include: Clinical care

 Will the program exist to provide clinicalcare, or will there be another concurrent
goal or emphasis (e.g., research,education)?
 Is there a plan to incorporate an
educational component into the program,
such as seminars for healthcare
providers or workshops for patients andfamilies?
 Will subspecialty care be available (in theclinic, on a referral basis)?
 Will this program fill an unmet need in thecommunities that your institution serves?

 Psychosocial support

Assessing Resources Education (e.g., patient/family,
healthcare professional) What resources are available to establish
and maintain the program?
- What personnel are available tosupport LTFU patients?
- What clinic space is available for use?
When is it available?
- What are the possible funding
sources?

 Research
Assessing Institutional Needs
The specific needs and resources of an
institution are closely linked with program
goals. Consider how the LTFU program will
help fulfill your institutional needs:
 Will a LTFU program strengthen and/or
extend the range of services alreadyoffered?
 Will the LTFU program serve to extend
your institution’s referral base?

 Does your institution have the resources(e.g., administrative personnel, space,money, devoted staff) to support a formal
clinic or are your patients better served in
a community network?

“To facilitate the transition from pediatric oncology to community
providers, our clinic has focused its efforts on educational interventions
to empower the survivor with the resources to advocate for appropriate
community health care. The broad mission of the ACT Clinic is toimprove the quality of life of the long-term childhood cancer survivor . . . .
Patients who are in remission 5 years after diagnosis and at least 2 years
following completion of antineoplastic therapy are eligible for transfer tothe ACT Clinic. . . . Survivors are evaluated annually by the clinic staff
until they are 10 years’ post-diagnosis. . . or at least 18 years of age,whichever comes last. After alumni survivors are discharged to the careof community physicians, the St. Jude Cancer Registry continues toperform annual follow-up for the lifetime of the patient.”- Hudson et al. 200420

18

Section 2: Program Development

Identifying, Recruiting & Retaining Patients
Establishing a plan for patient identification
and recruitment is an integral part of the
program development process. Consider
the following issues:What are the eligibility criteria?

What are the referral source(s)?

How will eligible patients be identified
and approached?

Will services be limited to patientstreated at your institution – or will
patients from outside institutions be
eligible to participate?



How will patients be tracked andnotified of return appointments in atimely manner?

Assessing Patient Needs
In addition to the needs and resources ofeach institution, one should consider theneeds of the patients and families
participating in a LTFU program.


Where will services be provided?



Who will be providing the services?

Will providers be familiar with theneeds of this patient population?

What process will be used for patient
recruitment?

What types
accepted?

Is there a clinical database in place tomaintain the following information:Will there be opportunities for patients
to participate in clinical research?



What
role
will
the
survivorsthemselves have in planning for andevaluating LTFU services?

- Current address and phone number- Updated insurance informationofpayment

willbe- Contact information for next-of-kin“Our clinic realized that many of our patients lived over an houraway and could not easily travel (which included taking time offof work and/or school) for an appointment now that their cancer
was in remission. We recognized that they still needed
specialized follow-up care after treatment for cancer. So, we
decided to bring the clinic to them. Once per month we hold an
out-reach clinic for survivors. We come to them (MD, the PNP or
RN, and the social worker) and ensure that they obtain theservices they need.”- Genevieve Sylvain, RN, Coordinator LTFU Program
The Children’s Hospital, Denver, CO

19

Section 2: Program Development

DETERMINING PROGRAM PARAMETERS
nce you have considered the initial
issues in program development, it isimportant to determine specific parameters
for your LTFU program. To do so, weigh theoptions listed below:

 Inform the patient and family regarding
how the LTFU program differs from
regular oncology follow-up (e.g., emphasis
on health education and monitoring forlate effects of cancer therapy)

Initiation of Long-Term Follow-Up Care

 Identify barriers to transition, such as: Decide when transition to the LTFU
program will occur. Possibilities include:- At a set time interval (e.g., one or two
years) following completion of active
treatment- At a set time interval (e.g., five years)
following diagnosis- Differing criteria based on diagnosis ormode of treatment (e.g., transplantpatients may enter the program at
different times than patients treated withconventional therapy; children who havesurvived a brain tumor may not be readyfor LTFU until they have been off
therapy longer than other patients)
 Most criteria require that the patient be inremission and fully recovered from theacute effects of therapy- Primary oncologist not wanting to giveup care- Patient/parents not wanting to transition- Scheduled clinic time inconvenient forfamily- Financial/insurance status (e.g., may beunable to pay for follow-up visits and/or
tests not covered by insurance)
 Have a familiar staff member in clinic, if
possible, during the patient’s first visit, if
the LTFU staff is not known to patient/familyAge Range/Age Limits
Determine the upper and lower age limits for
the LTFU program. Considerations include:

Transition from Acute Care to LTFU Is the upper age limit determined by an
institutional policy? (e.g., patients older
than 18 or 21 years of age may not be
accepted at some pediatric institutions)

Transition from acute care to LTFU is aprocess rather than an event. In advance,
the LTFU team and other staff within thedepartment should discuss how and whentransition to LTFU will occur (see also:
Section 1). The following are suggestions toease the transition process.

 If there is no upper age limit at yourinstitution, a decision must be maderegarding whether the LTFU program willcontinue to see patients throughout thelifespan, or whether patients will betransitioned at some point to the adultmedical care system

 Plan ahead: Planning for entry into the
LTFU program should be taken into
consideration before the patient is formallyready to enter the program. The concept
should be introduced early on so that
LTFU becomes a logical continuation ofcare.

 Some insurance companies may not
approve charges for an adult to be seen in
the pediatric setting despite the fact thatthe patient is a childhood cancer survivor
 Patient eligibility for LTFU
protocols (see Section 4)

research

20

Section 2: Program Development"We recently saw a 60 year old woman who was treated in the
1950's for Wilms tumor. She found us on our website and said she
wanted us to see that children did survive back then. There wasno chemo, but she had radiation. She has tremendous scoliosis.
She said, ‘I survived . . . now you can learn and I can learn.’”- Brian Greffe, MD, H.O.P.E. Clinic Director
The Children's Hospital, Denver, COGeneral versus Specialized LTFU
Consider what type of general and/or
specialty services will be provided by your
LTFU program: Will the LTFU program best serve yoursurvivor population with a general clinic forall survivors?
 Is there a need for specialized LTFU
programs for specific populations?
For example, all brain tumor survivors may
attend a separate LTFU clinic that isstaffed by a neuro-oncologist, neurologist,
endocrinologist, pediatric neuro-oncology
nurse, and social worker. Likewise, manybone marrow transplant programs provide
specialized follow-up care that can track
immune reconstitution, monitor chronic
graft-versus-host disease, and provide
neurocognitive testing.
 Are there resources to support both ageneral and specialized clinics?
 Will your research or educational
programs have a specialized focus?
 How will you recruit and structure clinics
requiring specialists from other fields?
Determining Frequency of Clinic Visits
The number of survivors who need to beseen, the frequency of their follow-up visits,
the clinical resources available to provide
service to patients, and the number ofsurvivors
that
can
be
physicallyaccommodated in a single clinic session will
ultimately determine how frequently toschedule LTFU clinics.

 Staffing: Is there a physician and/or
nurse practitioner who will be allocatedsolely to the LTFU program? If not, whatis the availability of clinicians to see thesepatients? How often are they available?
 General versus specialized long-term
follow-up: Will the program include a
specialized clinic such as Neuro-Oncology
or BMT?
These specialty clinics are
sometimes scheduled less frequently than
general LTFU clinics, depending on how
many patients need to be seen.
 Exam room availability: Where will thepatients be seen? Do you have the space
to see these patients within your oncology
outpatient area? Are there alternate or
off-site locations where the clinic may beheld?
 Follow-up: Who will follow-up on the
results of screening evaluations for eachpatient (e.g., yearly ECHOs, CBCs, etc.)?
Is there an existing system with personnel
to track and report these results? If
results are abnormal, what will theprocess be to provide intervention and/orreferral?
 Risk-Based Stratification for LongTerm Follow-Up Care: Some cancer
survivors may need more frequent,intensive and detailed assessment andfollow-up than others.21 For example,
those with stage I or II Wilms tumor or
germ cell tumor requiring surgery alone
may need only limited follow-up. On theother hand, ongoing intensive follow-up
would be mandatory for a transplant21

Section 2: Program Development

survivor, a patient with a stage IV tumor,
or a patient who received radiation or“megatherapy.”
Transition to Adult Healthcare System
Determine if/when transition from your LTFU
program will occur. Possibilities include: When the patient has been seen a certain
number of years in the LTFU clinic and isready to transition to community-basedcare No transition (the patient continues to be
seen in the LTFU clinic for life) When the patient reaches an age when
he/she is no longer eligible to be seen at
the pediatric institution

Resources for Assisting Patientswith Healthcare Transitions
Patient Guides:
Closing the Umbrella: When Your Child's Treatment Ends, American Cancer
Society: www.cancer.org
Facing Forward: Life After Cancer Treatment, National Cancer Institute:www.cancer.gov

Duffey-Lind E., Diller L, O’Halleran E. Transition to Survivorship – What Parents
Should Know. Dana-Farber Cancer Institute, 2006 (available for purchase)
The Mountain You Have Climbed. National Children’s Cancer Society.
www.nationalchildrenscancersociety.org (click on “Publications”)

Websites:
The Healthcare Transition Initiative at the University of Florida:
http://hctransitions.ichp.ufl.edu

University of Illinois at Chicago Transition Information and Resources:
http://internet.dscc.uic.edu/dsccroot/parents/transition.asp

Maternal and Child Health Library:
http://www.mchlibrary.info/KnowledgePaths/kp_CSHCN.html#transition

22Section 2: Program Development

BUILDING A MULTIDISCIPLINARY TEAM
urvivors have unique needs that are
frequently
medical,educational
andpsychosocial in nature. To promote thecoordination and teamwork to ensure thatthese needs are met, and to promote healthand prevent future illness, many LTFU
programs have established multidisciplinary
teams consisting of professionals fromnursing, medicine, education, social work,
psychology, and related fields. The coreteam often includes a nurse coordinator,
pediatric
oncologist,socialworker,psychologist, and school liaison.
The keys to the formation and operation of a
successful multidisciplinary team include: Committed members who have thesupport of their department/supervisor
 An initial meeting during which eachmember’s role and previous experiencein pediatric oncology are respectfully
discussed
 A mission statement that clearly sets
forth the purpose of the team, the scopeof its activities, and its guiding
principles. (This may be the LTFU
program’s mission statement with which
all team members are in agreement.) Creation of a team protocol thatspecifies the roles and responsibilities ofteam members in all aspects of the
program (e.g., clinical care, education,
and/or research) Periodic internal program analysis andoutside evaluation of how the team isfunctioning, so that it continues toachieve the purposes for which it wasestablished
Building Specialty Teams
Surrounding the core survivorship team area group of physicians and specialists familiar
with evaluating problems in childhood
cancer survivors. Such specialties typically
include radiation oncology, cardiology,
pulmonary, orthopedics, neurology, andendocrinology. A LTFU program may
partner with certain specialty practitioners toanswer research questions or to provide
specialty clinical services, such as “cardiac
clinics” for those who received high doses ofanthracyclines and/or mantle radiation, or
endocrine clinics for those with thyroid
problems or growth and development
concerns. Regardless of the model of carethat is implemented, LTFU programs must
be committed to a partnership withhealthcare providers across a wide range of
specialties to optimally meet the needs ofchildhood cancer survivors.14

Mission Statement: Example“The mission of the Survivors of Childhood Cancer Program is toprovide clinical care and education for survivors of childhood cancer
and improve outcomes through research and discovery.”- Robert Goldsby, MD, Medical Director
UCSF Survivors of Childhood Cancer Program23Section 2: Program Development

PROGRAM FUNDING
ll LTFU programs need funding. The
resources you have or are able to obtain will
directly affect your clinic and the services
you have to offer. In this section you willfind information about some of the different
funding sources available and how to workwith them.
Funding is often needed for:
 Salary support, to include personnel toprovide:− Clinical care
− Database development− Survivor education
 Community outreach Assisting uninsured patients

Staff development
Program marketing
Survivorship research

Sources of Funding
The function and operation of funding
sources varies greatly depending on thetype of institution (e.g., free-standing
children’s hospital, private or corporatelyowned hospital, large or small institution).
Get to know your institution’s guidelines forfunding sources. Table 4 below provides
examples of possible funding sources invarious financial sectors.

"We have been able to help uninsured survivors through an endowment,
gifted by an adult cancer survivor who worked in our program. Herlegacy was to specifically help uninsured survivors. It is important tobuild on an endowment that will generate interest and be selfsustaining. This will allow you to help survivors on an ongoing basis."- Brian Greffe, MD, H.O.P.E. Clinic Director
The Children’s Hospital, Denver, CO

Table 4: Potential Sources of LTFU Funding
FUNDING SOURCE

EXAMPLES

URL Federal, State, and Local
Government

 National Institutes of Health (NIH) National Cancer Institute (NCI) Health Resources and Services
Administration (HRSA)

www.grants.gov

 National, Local andFamily Foundations

 Lance Armstrong Foundation
 Hope Street Kids
 Children’s Cancer Fund
 Leukemia and Lymphoma Society

www.livestrong.org
www.hopestreetkids.org
www.childrenscancerfund.org
www.leukemia-lymphoma.org

 Associations

 American Cancer Society
 American Academy of Pediatrics
 Candlelighterswww.cancer.org
www.aap.org
www.candlelighters.org

 Internal Sources Hospital Foundation
 Research Institute Philanthropy Department
 Endowments

 Fundraising Swim Across America

www.swimacrossamerica.org

24Section 2: Program Development“No matter where your funding comes from, LET PEOPLE KNOW WHATYOU ARE DOING! Develop a long-range plan for your program. Havemeasurable goals that are compatible with your institution’s mission.
Build a relationship with your hospital's Foundation and Public Relations
Department. Initiate a simple meeting or presentation to educate people
about your program. The more people know about your program, goals,
and potential impact on survivors, the better off you will be.”- Katy Murphy, RN
Children’s Hospital of Wisconsin

Potential Sources of Funding Assistance Grant writers: These specialists are
sometimes housed within the hospital,
research center, or foundation.
 Hospital foundation staff: May be able
to make connections with potential donors.
 Departmental staff: Nursing director,
medical director, or administrator – again,
make sure your plan is known!
 Survivors and their families: They canbe the most articulate and convincing
voice for a program. A survivor’s story canvalidate a LTFU program with real life
stories and a unique eloquence.
What Works?
 Know your funding source: What are
their areas of interest, average gift size,
typical organization funded? Some grants
are specific regarding the types of salary
support they will support, (e.g., MD/PhD,
RN, Social Work, Psychiatry, Child Life
Therapy, etc.)
 Subscribe to listservs: Join a listserv
and receive e-mails regarding grant

opportunities and guidelines; scope canbe broad or narrow (See Table 5 forsuggestions).
 Collaborate with community groups:
Partner your medical expertise with the“social”
expertiseofgrass-roots
organizations, such as Gilda’s Club. You
can apply for the funding, or if better
suited, your community partner can apply.
 Know your budget: Apply for appropriate
grants that match your needs.
 Apply appropriately: Be aware of grants
with state-specific requirements.
 Avoid competition: To avoid competing
against your colleagues, make yourapplication process known within yourinstitution.
 Be specific: Be aware that there are grant
opportunities for minority researchers andresearch focused on minority populations.
 State your needs: Have your program
development plan ready. Know what you
need – details should be concrete.

"I speak to groups in the community whenever I canabout survivorship.
We have someone in thefoundation who we work with, and whenever she asks
me to speak, I talk about survivorship."- Brian Greffe, MD, H.O.P.E. Clinic Director
The Children’s Hospital, Denver, CO

25

Section 2: Program Development

Table 5: Listservs
LISTSERVURLThe Commonwealth Fundwww.cmwf.org

The Federal Registerwww.gpoaccess.gov

Human Resources and Services Administrationwww.hrsa.gov

The Robert Wood Johnson Foundationwww.rwjf.org

Third Party Payors
Potential sources of health insurance
coverage for patients may include: Private insurance through employer
 Private health insurance purchased by
the patient or through family coverage
 Government insurance programs suchas Medicaid, Medicare, or StateChildren’s Health Insurance Program(SCHIP)
 Continuationofhealthcoverage(through COBRA coverage - theConsolidated
Omnibus
BudgetReconciliation Act)Children and adolescents with cancer areoften covered under state Medicaid
programs, but coverage under these
programs often ends when the patientreaches a certain age (the age varies bystate, and is usually between age 18 and21). Private insurance coverage underparental policies also generally ends when
the patient reaches a certain age, dependingon the policy. With some policies, coverage
may continue while the child is a full-timestudent, but there is generally an upper age
limit, which varies depending on theinsurance plan and state of residence.
Many young adults lack the insurance
benefits traditionally associated with full-time
employment, and others are unable tosecure full coverage due to their previous

cancer diagnosis.
Thus, many adultsurvivors of childhood cancer may beuninsured or under-insured.
It is imperative to pre-screen patientsscheduled to be seen in long-term follow-up
to ensure adequate insurance coverage,
because it is not uncommon for a patient tohave changed insurance carriers, or to havelost insurance coverage altogether. A
comprehensive follow-up visit that includes“routine” laboratory and other commonlyordered studies (such as echocardiograms
or pulmonary function tests) may be very
expensive. Patients who are uninsured orunder-insured may face years of payments
for such services. Early efforts to confirm
insurance coverage decrease potential
problems related to delays or cancellation ofservices, financial burdens for the patient,and lack of reimbursement for the clinic.
Survivors who are uninsured, underinsured,or who are reluctant to keep LTFU
appointments
becauseof
insurance
concerns can be directed to the Medical
Social Work Department or a Patient
Financial Representative in the institution's
billing department for assistance. Ultimately,each LTFU program must decide how thebilling for uninsured and under-insured
patients will be managed, based on theiravailable resources, including institutional,
governmental, and philanthropic sources.

26Section 2: Program Development

PROGRAM MARKETING
reating an effective marketing strategy
starts with a dedicated LTFU team, including
a medical director and program coordinator
committed to sharing in the marketing
responsibilities. In addition, partnerships
with your institution’s business development
division and public relations department areinvaluable because of their connections andability to highlight your LTFU program.

Examine Current Competition: The next
step in the marketing plan is to determine
your target market, based on the local
environment and knowledge of consumer
use trends. Are there other LTFU programsin the area? If so, would your institution andsurvivors benefit from developing andmarketing a specialty survivorship program
rather than a general LTFU program?

Marketing Plan

Develop Marketing Tools:
Finally,
determine a plan for promoting yourprogram in conjunction with the businessdevelopment office.
Potential marketing
tools include:

Define Goals: The first step in a marketingplan is to define goals clearly. The medical
director, program coordinator and otherteam members need to collaborate anddetermine the major objectives for the LTFU
program. Suggestions regarding potential
goals can be obtained through: Patient and family interviews
 Patient surveys
 Focus groups Suggestion box
 Survey of healthcare team members
Define Audience: Consider both internaland external marketing. Internal marketing
to other medicine subspecialties within yourinstitution (such as cardiology, endocrine,
and psychiatry) - and to multidisciplinarygroups (such as child life, social work,
physical therapy, and nursing) – can be a
powerful mechanism to recruit patients andadvertise services.
When targeting theexternal market, be aware of whether you
would like your marketing approach to reach
only survivors and families and/or others,
such as pediatric providers in private
practice, external specialty providers, andinsurance companies.

 Brochures or handouts
 Website Newsletter Annual survivor events
 Educational sessions
 Fundraising events
 Posters
 Publicity via patient/parent support
groups Internal news releases
In summary, the success of a LTFU program
depends not only on the structure of the
program and clinic – factors determined byassessing program goals, and institutional
and patient needs – the program must also
market and communicate the availability ofits services in order to maximize utilizationand ensure that survivors are able to accessthe LTFU services that they need.

27Section 3: Delivering LTFU CareSECTION 3:
DELIVERING LONG-TERM FOLLOW-UP CAREEDITOR:
Marcia Leonard, RN, PNP
Coordinator, Long-Term Follow-Up Clinic
C. S. Mott Children’s Hospital, University of Michigan, Ann Arbor, MI

28

Section 3: Delivering LTFU Care

CLINIC OPERATIONS
hile the number of survivors has grown,
so has the need for special programs forchildhood cancer survivors who experiencelate effects of treatment. A multidisciplinary
team approach is ideal for the long-term
follow-up of survivors who often havemultiple health and psychosocial needs that
require a comprehensive approach. The
team works together to evaluate the patientandprovidemedicalmanagement,
education, screening, and referrals toappropriate community resources.
Care Delivery Methods
The LTFU team generally follows thesurvivor on an annual basis and provides
risk-based survivor care, which includes
surveillance for late effects and targetededucation and counseling focused on healthmaintenance and promotion.
Patients
attending the LTFU clinic undergo acomplete physical exam and targetedstudies to evaluate organ function andmonitor for late effects; these studies areindividualized based on the survivor’s
treatment history. A comprehensive LTFU
programalso
providespsychosocial
evaluation, guidance, and vocational
assistance.
There are a variety of care delivery models
that may be utilized in LTFU, all of which
can be effective. In some programs,
physicians may provide most of the care,including not only the traditional history andphysical exam, but also the educational andanticipatory guidance components. In otherprograms, nurse practitioners provide similar
services, and rely on the physician, who
serves as the Medical Director, forconsultation and guidance as needed.
Clinic Staff
Requirements for clinic staff will vary witheach program, and you may find that as
your program grows, you may need toincrease or change members of your team.

However, most programs will require atminimum the following staff members:
Medical Director:
A physician who is
responsible for the medical care provided by
the program. The medical director may or
may not be involved in the everyday
operation of the clinic, but should provide
oversight and be available for consultation
as necessary based on patient needs.
Clinician: A healthcare professional who
provides direct patient care in the clinic. The
clinician may be a physician (who may also
serve as the medical director), nurse
practitioner (NP), or physician assistant(PA). The clinician obtains the history andperforms the physical exam, orders specificscreening evaluations and tests, andprescribes recommended follow-up. The
clinician works closely with the medical
director. Many LTFU programs are nurseled, with the NP acting as the primary
coordinator of the program.
Nurse
practitioners specializing in childhood cancer
survivorship often have prior experiencemanaging pediatric oncology patients during
the acute treatment phase and therefore areknowledgeable regarding the entire illness
continuum.
The NP is capable ofevaluation, management and follow-up ofpatients in a late effects program. In manysettings, the NP sees patients autonomously
and may also function as educator,
researcher, and program manager in
addition to serving as the program's
clinician. The role of the nurse practitioner
specializing in childhood cancer survivorshiphas been described by Hobbie.22
Nurse Coordinator:
A nurse who is
responsible for overall care delivery within
the program. The role of the nurse
coordinator may vary depending on the
program’s needs, but often includes
responsibility for reviewing medical records,
generating treatment summaries andscreening recommendations, coordinatingreferrals after patients are seen by the29Section 3: Delivering LTFU Careclinicians, and providing extensive patient/family education. The nurse coordinator
often provides test results to the family
and/or patient, and maintains contact withprimary care physician. In some programs,
the clinician (e.g., nurse practitioner) alsofunctions as the nurse coordinator.
Social Worker: The social worker is
responsible for providing psychosocial
assessment, education, and support to thepatient and their family members, and refers
patients to resources as needed based on
individualized assessment.
Secretary/Receptionist: This team member
is generally responsible for the clinic
organization. Scheduling appointments,
registration of patients, organizing charts
and a variety of other daily activities are
critical to clinic flow.

Physical Therapist: The physical therapist
providesassessmentofphysical
performance (or physical function) for
patients in the program.
The physicaltherapist may also provide specific physicalactivity recommendations for patients whose
impairments and activity limitations prohibit
their participation in usual physical activity
and/or exercise.
Psychologist: A licensed mental healthprofessional who provides psychologicalassessment and referral as indicated forpatients in the program. The psychologist
may perform or schedule standardized tests
as dictated by follow-up in protocols.
Clinical Research Assistant (CRA): An
individual with background and experiencein clinical research who is responsible fordata collection and coordinates research
activities within the program.

Additional Staff:
As the LTFU program develops and grows,
additional staff members, who see patientson an “as needed” basis, may be added,
such as:Outreach Educational Coordinator: Staff
member responsible for assisting withschool issues; often makes school visits andhelps schools implement or develop
individualized education programs.

Nutritionist: The nutritionist obtains a diethistory, calculates body mass index anddiscusses nutritional issues.

Neurologist, Neurosurgeon, and Neurooncologist: Specialists who may participate
in or provide follow-up care for patients withcancers of the brain or spinal cord.

Dentist: The dentist performs a basic oral
examination, and provides information,
guidance
andreferrals
for
care.

Bone Marrow Transplant Physicians:
Specialists who may participate in or provide
follow-up care for patients who haveundergone a bone marrow (hematopoietic
stem cell) transplant.

30Section 3: Delivering LTFU Care

Pediatric Nurse Practitioners: Scope of PracticeMany pediatric oncology NPs are trained and certified as pediatric nurse practitioners (PNPs).
Although the scope of practice for PNPs is generally limited to patients within the pediatric age
range (birth to 21 years), the National Association of Pediatric Nurses Practitioners (NAPNAP)
provides guidance regarding circumstances when the scope of PNP practice may extend beyond
the pediatric age range, as follows:“There are special situations in which it is appropriate for the PNP or other pediatrichealthcare providers to care for an individual older than age 21 years until appropriate
transition to adult healthcare is successful. There is a growing population ofadolescents and young adults with special healthcare needs, chronic conditions, anddisabilities who need transition care from pediatric to adult healthcare settings. Theseadolescents and young adults face unique challenges in accessing adult healthcare
providers who can provide adequate primary and specialized healthcare services.23, 24
Pediatric healthcare providers have an extensive knowledge base regarding
developmental issues and a unique awareness of the concerns pertaining toadolescent and young adult healthcare provider transitions and are qualified to assist
25
these patients during the transition phase. Establishing exclusive upper age limits to
PNPs’ practice may create a significant barrier for PNPs and may limit access tohealthcare for this population.
In summary, the PNP is highly qualified to provide care to individuals from birth to age
21 years, and in special circumstances beyond age 21 years. NAPNAP firmly
supports the scope of practice for PNPs to be inclusive of newborns, infants, children,
adolescents, and young adults. NAPNAP additionally supports the PNP’s role as aprovider of healthcare for individuals older than 21 years with unique needs andfor young adults during the transition to adult healthcare.”National Association of Pediatric Nurse Practitioners
26
Position Statement on Age Parameters for PNP Practice, 200231

Section 3: Delivering LTFU Care

Clinic Space
Ideally, the LTFU clinic should have adesignated space away from the active (“ontherapy”) pediatric oncology setting.
If
space is shared within the pediatriconcology clinic, every attempt should bemade to schedule the LTFU clinic during theleast busy clinic days and times. It is
important to dedicate time, space andpersonnel to a new LTFU program. If the
program is “squeezed in” within the normal
clinic day, it is easy to become overwhelmedwith the needs of patients currently receiving
therapy at the expense of the LTFU patients.

 Frequency of clinics varies with program
size, funding and needs.
 Many programs begin with monthly clinics
and increase the frequency as necessary
and as available resources allow.
 Yearlycomprehensive
visitstakeconsiderable time; most programs see 610 patients per scheduled clinic day.
 Many programs are set up to have thepatient evaluated by all members of themulti-disciplinary team at the initial visit;
therefore, additional time should beallotted to accommodate these multiple
encounters.

A multi-disciplinary clinic requires morerooms than are typically needed for a
traditional clinic setting. Because more than
one caregiver will see each patient, eachroom will be occupied for a significantly
longer time than during a traditional clinic
visit. Room space can be allocated asfollows:

 Subsequent visits generally require lesstime, because the patient may not need to
be seen by all multidisciplinary members.

 By personnel. Each member of thecomprehensive team is assigned aroom, and the patients move from room
to room.

 Some centers follow specific populations
with unique needs (e.g., brain tumor, bonetumor, or bone marrow transplant
recipients) in dedicated clinics. Allotmentof rooms and schedules will need to be
tailored to the specific needs of these
specialized teams.

 By patients. The patient remains in
one room, and the team members movefrom room to room.
To make a comprehensive clinic movesmoothly, regardless of which room
allocation system is used, the team needs todetermine how much time each member
requires with a typical patient and allocate
room/schedules accordingly.
Schedules
The size of the LTFU program andfrequency of clinics will vary depending on
the type of care offered, as well as the
population served.

 Scheduling additional clinics during
summer, spring and winter breaks willallow students to attend without missing
school.

 Some centers schedule patients withsimilar needs for visits on the same day,thereby utilizing multi-disciplinary staff
most efficiently. For example, a clinic
dedicated to bone tumor patients may
haveaphysicaltherapist,
orthotist/prosthetist,
andorthopedist
present. Another way to group patients isby treatment modality; for example, aradiation therapist may be on hand forclinics attended by patients who weretreated with radiation.

Every patient in our long-term follow-up clinic is seen by the Nurse Practitioner,
Social Worker, Nutritionist and Physician. To allow a smooth schedule, we havelearned that we allow a 2-hour time slot for each patient, and schedule four patients
per each time slot. We use four rooms and each of the team members rotates
through all four patients, spending about 20 to 25 minutes with each patient. We
can then chart/dictate/discuss all four patients before the second group arrives.
- Marcia Leonard, RN, PNP
Coordinator, LTFU Clinic, University of Michigan
32Section 3: Delivering LTFU Care

Clinical Databases
Establishing a clinical database is critical for
tracking patients and providing continuity ofcare. Each new patient seen in the LTFU
clinic should be added to the clinicaldatabase. Some centers may have accessto a web-based, hospital-wide database. If
you are developing your own database,computer software programs, such as
Excel®
orAccess®
aregenerallystraightforward
and
easy
to
use.
Institutional CRAs or others with expertise inclinical research or data management may
be able to provide guidance regarding
development of a clinical database for the
LTFU program. Other centers may continue
to utilize an index card file system
successfully. As patient numbers increase,some method of tracking appointments andfollow-up should be in place.
Forms and Supplies
Most programs develop and stock
specialized LTFU forms and supplies tofacilitate patient visits and to capture andmanage the large amount of data collectedduring comprehensive annual visits. The
following forms and supplies are suggested.
Sample forms are available in Appendix 3.
FORMS
 Initial visit form - to include patient
demographics, relevant medical andsocial history, and comprehensive data
capture Subsequent visit form - to include
interval history and brief data update Caregiver report form (if applicable) Growth chart (should be updated
regularly until full growth is achieved)
 Patient education tracking form

SUPPLIES
Staff Resources: Copies of COG Long-Term Follow-Up
Guidelines (or computer and printer toallow access to use as needed)
 Lists of local/state subspecialists andreferral guidelines Dental eruption chart Tanner staging chart Immunization guidelines
 Reference books (see Section 1)
Patient Education Materials:
 Treatment summary/recommendations
for follow-up
 Copies of the COG Health Links (orcomputer and printer to access asneeded) Breast self-exam teaching model andvideo Sun safety and skin cancer teachingmaterials
 Tobacco education/cessation program
teaching materials
 Nutrition/calcium/exercise handouts Information about sexuality/safer sex
practices Information about camps, support
groups, and scholarships for childhood
cancer survivors
 A handout regarding how to order:Childhood Cancer Survivors: A Practical
Guide to Your Future (2nd Edition) by
Nancy Keene, Wendy Hobbie and Kathy
Ruccione, Sebastopol, CA: O’Reilly
Media, Inc., 2007. This book is currently
available free of charge to “needy”
patients at the following web address:www.candlelighters.org/Book_Order_Form.pdf

33Section 3: Delivering LTFU Care

PREPARING FOR THE CLINIC VISIT
reparation for the clinic visit should begin
well before the scheduled date. Essential
elements include reviewing and extracting
data from the medical record andpreparation of a comprehensive treatment
summary.
Exposure-based screening
recommendations and a comprehensive
medical summary are compiled and sharedwith the multidisciplinary team.
Medical Record Review
Ideally, a comprehensive treatment summary should be prepared as patientscomplete the acute phase of their treatment.
Unfortunately, in most institutions, this is not
usually done. Therefore, a comprehensive
treatment summary must be compiled prior
to the initial visit in the LTFU clinic. A
thorough review of the medical record is thefirst step. Arrangements should be madewith your institution’s medical records
department to ensure regular delivery ofarchived medical records well in advance ofthe scheduled visit. The chart review can bedone by a nurse, clinical research associate,or clinician. The purpose of the review is tosummarizethepertinent
information
regarding the cancer history and treatment,
generate a comprehensive summary, anddetermine appropriate recommendations forrisk-based care, screening, and education.
See box on Page 46 for details regarding
preparation of treatment summaries andAppendix 1 for treatment summary templates.

Medical Record Issues
One of the most challenging record reviews
will be for the patient who was not treated atyour center. In order to provide a clinicalsummary, you will have to try to obtain
medical records from the previous center oftreatment. A signed “release of information”
form will need to be obtained from thepatient authorizing release of medical
records. It is helpful to specifically request
treatment
roadmapsortreatmentsummaries.
This can be a time-consuming process, so
requests for information from other centersshould be made well in advance of thescheduled LTFU visit. A good initial contact
person for assistance in obtaining thisinformation is often the CRA at the treating
institution. His/her name can be obtained
from the COG website. It may be possible tosend/fax the release of information directly
to the CRA, and receive the treatment
roadmaps or summary sheets directly.
Screening Recommendations
Based on the treatment summary, the COG
Long-Term Follow-Up Guidelines should be
used to determine the need for specificlaboratory work, radiologic evaluations,cardiac studies, etc. Timing of these studies
should be determined (e.g., whether they
will be scheduled on the same day as the
LTFU visit; and if on the same day, before orafter the clinic appointment).

“When we first started our clinic, we “pre-ordered’ laboratory studies,
based on treatment exposures and had the patient visit the blood drawing
station before their appointment. Not infrequently, issues arose following
the history and physical that prompted the clinicians to request additional
blood studies. Many of our patients weren’t happy about going back for asecond blood draw. We changed our practice and now schedule bloodwork at the conclusion of the visit to eliminate this problem.”- Marcia Leonard, RN, PNP
Coordinator, LTFU Clinic, University of Michigan
34Section 3: Delivering LTFU Care

Numerous studies on the same day makefor a very long time at the clinic, which may
be exhausting for some families. Other
patients, especially those who live a
considerable distance from the center, may
prefer scheduling everything at one time.
Good health habits and regular check-ups
can keep a survivor healthy and reduce therisk of developing late effects. Many adultcancers are caused by detrimental lifestylefactors. Good nutrition, regular exercise,sunscreen use, avoidance of tobacco
products or exposure to second handsmoke, moderate use of alcohol, andmaintaining a healthy weight can contributeto healthy survival. Using proper safety
equipment such as bicycle and motorcycle
helmets, seat belts and safety goggles canprotect a survivor from injury. Never driving
while under the influence of alcohol or drugs
can save lives.
 Every survivor should be counseledregarding the risks associated withtobacco use, illegal drugs (e.g., “party
drugs”), and other high-risk activities.
Referrals to appropriate substance abuseclinics, counselors or tobacco cessation
programs should be provided as needed.
 Every survivor should be counseledregarding safe sex practices and the useof preventive measures to prevent
unplanned pregnancies and sexuallytransmitted diseases

 Female survivors at increased risk forbreast cancer should be taught breast
self-exams
andthecurrent
recommendation for mammograms andclinical breast exams. Contact your local
American Cancer Society for freebrochures that you can distribute during
the visit.
 Every survivor should be counseled
about sun protection strategies, andthose at high risk should be taught skinself-exam and counseled regarding theimportance of regular clinical exams
Team MeetingsOnce the initial information has beengathered and the clinical summary is
prepared, this information should be sharedwith members of the multi-disciplinary team.
Dissemination of information may occur
during a pre-clinic team meeting, in writtensummary form or via a computerized
medical summary.
In many clinics, thenurse practitioner determines which teammembers will need to evaluate an individual
patient prior to the visit.
In some clinics, the multidisciplinary teammeets to review new patients prior to theirfirst visit to the LTFU clinic. The survivor’s
history is presented and existing andpotential late effects are reviewed. From thismeeting, the plan is set for the clinic visit,
the necessary tests are ordered, andreferrals are written.

35Section 3: Delivering LTFU Care

PREPARING THE TREATMENT SUMMARY
Include the following information in the Treatment Summary. Once completed, the treatment
summary should be incorporated into the survivor's medical record. (See Appendix 1 forTreatment Summary Templates).
¾ General background information, including: Demographics (e.g., name, sex, date of birth, contact information, insurance) Pertinent medical history prior to the cancer diagnosis(e.g., Down syndrome, congenital heart defects, prematurity) Diagnostic details (e.g., diagnosis, date of diagnosis, presenting symptoms, sites involved,
stage, pertinent diagnostic features such as physical exam and radiologic findings,
histology, morphology, flow, tumor markers, and cytogenetics)
 Name of treating institution/physician
 Complications and significant events
 Transfusion history Hepatitis C and HIV history/test results
 Adverse drug reactions/allergies
 Date treatment completed Date of any relapses or second malignancy and associated treatment¾ Therapeutic summary, including: Treatment protocol number and description, if applicable Chemotherapy agents, including:− Route of administration for all agents− Cumulative doses for alkylators, heavy metals, bleomycin, and anthracyclines (manyprograms calculate cumulative doses for all agents used)− Designation of "high dose" versus "standard dose" for methotrexate and cytarabine("high dose" refers to any single dose >1000 mg/m2; "standard dose" refers to all single
doses <1000 mg/m2)
 Radiation therapy, including:− Field(s)− Laterality (if applicable)− Start/stop dates− Total radiation dose, number of fractions, dose per fraction, and boost dose/location (ifapplicable). Record doses in Gy (1 Gy is 100 cGy or 100 rads)− Radiation type (e.g., proton, photon)− Institution/facility and treating radiation oncologist
 Hematopoietic cell transplant(s), if applicable, including:− Type(s)− Date(s)− Conditioning regimen(s)− GVHD prophylaxis and/or treatment, if applicable Surgical summary, including:− Dates of surgical procedures− Names of procedures− Site (and laterality) of procedure, if applicable¾ Potential long-term effects by organ system¾ Recommendations for necessary screening tests and follow-up exams based on age andtreatment received
36Section 3: Delivering LTFU Care

STRUCTURING THE CLINIC VISIT
uring the initial comprehensive LTFU
clinic visit, the medical, family, andpsychosocial history should be reviewed.
The team should decide which members willcollect each component of the history (e.g.,
the social worker or psychologist may
assume responsibility for the psychosocial
details, whereas the clinician may focus on
the medical and family history).
In amultidisciplinary clinic, to avoid repetition, it
is important that not every member of theteam ask the same questions. However,critical history may be missed if importantquestions are not assigned to a specificteam member.

Health counseling should be done by theclinician or nurse coordinator and targeted tothe survivor’s treatment exposures. “Health
Links”(patient
educationmaterials
accompanying the COG Long-Term FollowUp Guidelines) can be reviewed with thesurvivor during the visit, and a copy given to
the survivor for further review at home.
Emphasis on a healthy lifestyle should also
be discussed during this visit. For example,
avoidance of tobacco use, and theimportance of a healthy diet and adequate
exerciseshouldbestressed.
Documentation of health counseling should
be recorded in the patient’s medical record.

The focus of the history should be relevantto the treatment exposures that the survivor
had.
The COG Long-Term Follow-Up
Guidelines should be used as a reference toidentify history questions relevant to thesurvivor’s exposures.

A comprehensive psychosocial assessment
should be done by the social worker or
psychologist. This interview should elicit
information related to the impact of thecancer diagnosis on the survivor’s current
psychosocial adjustment. In addition, crisis
intervention services and referral to local
behavioral
healthprovidersinthecommunity are key psychosocial services
that should be provided as indicated.

The physical exam should be performed by
the clinician (nurse practitioner, physician, or
physician assistant) evaluating the patient.
A comprehensive exam should be
performed, with a focus on organs at risk
due to the underlying disease andtherapeutic exposures. It is important to
identify portions of the exam that cannot be
performed in your clinic setting.
For
example, pelvic examinations or visionscreening may require referral to a
subspecialist. The Long-Term Follow-Up
Guidelines should be used as a reference toidentify critical components of the physicalexam worthy of focus.

The need for subspecialty care will be
dictated by the survivor’s underlying medical
conditions and the effects of the cancer
diagnosis and its treatment.
Attention
should be paid to thorough follow-up ofactive medical problems as well as
screening for asymptomatic complications.
As survivors reach adulthood, facilitating thetransition from pediatric to adult medicalcare providers may be a primary goal ofsome late effects clinics.

“At our institution the NP who completed the chart review and screening
recommendations is responsible for the flow of that particular patient through theactual clinic day. Responsibility falls on this NP to educate the patient on theirdisease/treatment, the actual and potential late effects, and ways to promote wellness.
Also, the responsible NP receives all multidisciplinary notes, obtains lab and screening
results, makes necessary referrals, communicates the plan to the team at the post
follow up meeting and summarizes the visit.”- Kathy Martin, RN, CPNP
Carolinas Medical Center, Charlotte, NC

37

Section 3: Delivering LTFU Care

POST-CLINIC FOLLOW-UP
ost clinic follow-up begins immediately
after the clinic visit. A meeting to summarize
patient status and further recommendations
should be scheduled and held on a regularbasis. In an effort to minimize the number of
meetings, some centers may combine
follow-up meetings with the subsequentclinic’s pre-planning session, while othercenters “wrap up” an active clinic day with ashort team conference. Key components ofpost clinic follow-up include sharing anddiscussing the impressions of the various
team members, tracking results of lab workand screening tests, making referrals,summarizing the patient visit in writing andmanaging contact/ongoing communication.
Most centers have a single staff person
responsible for summarizing the entire visit.
A mechanism should be developed forcontacting patients who did not arrive for
their scheduled clinic visits. This can bedone in writing or by phone and should be
documented in the medical record.
Tracking Results/Information
A single staff member should assume
responsibility for tracking results ofscreening tests (e.g., echocardiograms,
pulmonary function tests). These results
need to be forwarded to the staff person
responsible for the patient's overallsummary, so that necessary interventions(such as making referrals or ordering
additional tests) may proceed promptly andbe available for discussion at the next follow
up meeting.
In addition to test results, receipt of notesfrom multidisciplinary team members who
evaluated the patient is critical to summary
development. Incorporation of notes fromsocial work, nutrition, and other teammembers is as important to the summary as
the physical exam. Thus, the staff person
responsible for summarizing the patient’s
visit should collect these data.

Making Referrals
Many childhood cancer survivors will require
some level of care from subspecialists.
Referring patients to subspecialists withexpertise and interest in cancer survivors is
ideal, but not always possible. As LTFU
clinics are developing, emphasis should beplaced on networking with subspecialists to
help develop their interest and expertise in
the unique population of childhood cancer
survivors.
Many LTFU programs follow
patients from large geographic areas, so
locating subspecialty caregivers close to thepatient’s home is helpful. As LTFU clinics
become more established, relationships withspecific
subspecialists
may
becomeapparent and help direct referrals. Common
subspecialty referrals include: Audiology/ENT
 Endocrinology
 Cardiology
 Pulmonology
 Ophthalmology
 Nephrology
 Gynecology
 Reproductive endocrinology
 Orthopedics
 Psychology/Neuropsychology
 Adult primary care or internist
Other specialists to consider include: Developmental medicine
 Neurology
 Genetics
 Surgery (general, plastics, etc)
 Gastroenterology
 Urology

38

Section 3: Delivering LTFU Care

Summarizing the Visit
Summarizing the LTFU visit within a single
document can accomplish several goals.
The visit summary is a valuable tool for
educating and counseling patients regarding
their specific risks and the subsequent needfor continued monitoring. It is also an
informative tool for primary healthcare
providers to assist them in directing further
care. Finally, the summary can be used forreimbursement
documentation
andsubspecialty referrals, particularly forpatients with late effects that result insignificant functional limitations and/or
disabilities.
The following pertinent information should
be available at the time the visit summary isdeveloped: Medical records
 Treatment summary Multidisciplinary notes (e.g., history andphysical, social work assessment, childlife summary, dietitian’s assessment,
information from any additional teammembers.)
 Data from screening evaluations (e.g.,lab values, echocardiogram, pulmonary
function tests, audiogram reports,
imaging reports, etc.)
 COG Long-Term Follow Up Guidelines
 List of educational handouts provided(see Appendix 3)
 Referral list
Each LTFU clinic needs to develop a format
for
the
visit
summary
document.
Consideration should be given to who will
receive the summary, and whether thesummary can stand alone or whether itneeds a letter to explain the findings.

Most clinics send the visit summary to theprimary and/or referring healthcare provider
and to the patient or parents. The LTFU
clinic staff should decide if the same
summary will be sent to the patient, or if a
different “lay” format will be used.
In
addition, consideration should be given to
documentation for subsequent visits. Some
programs send the complete summary only
after the initial visit to the LTFU clinic andsend a shorter version at subsequent visits.
Other uses for the visit summary include
annual updates to agencies involved withthe survivor's care (e.g., Medicaid) anddocumentation in the medical record.
Standardizing Documentation
Templates help to standardize and decrease
the time required for clinic documentation.
Consideration should be given to developing
or using pre-existing templates for thefollowing (Samples in Appendix 1 and 3):






Treatment summary
Visit summary
Letter to primary care provider
Referral letters
Letter to patients/familyManaging Ongoing Communication
Once the visit summary (and letters, if
applicable) are complete, distribution of
informationiscriticalfor
ongoingcommunication. The following is a potential
distribution
list
for
LTFU
cliniccommunications:






Primary care provider
Medical chart
Involved specialists (e.g., endocrine)
New referrals
Patient/family“Each team member documents their encounter on a progressnote, which is placed in the chart. The NP incorporates theindividual notes into the main summary which is sent to theprimary care provider and subspecialists.”- Kathy Martin, RN, CPNP
Carolinas Medical Center, Charlotte, NC

39Section 3: Delivering LTFU Care

Patients Lost to Follow-Up
Finding patients lost to follow-up andbringing them back into the healthcare
system will minimize potential long-term
problems, enhance the patient’s quality oflife, and is potentially more cost-effective. In
addition, capturing data from patients lost tofollow-up is critical to the success of future
clinical trials development. Therefore,
developing a system for tracking patients isimportant. If a scheduled patient does notkeep an appointment, a follow-up letter
and/or phone call may be necessary toreschedule.
Locating patients can sometimes bechallenging. The institutional CRA and/or
tumor registrar are adept at searching forpatients lost to follow-up. Also, social
workers may provide insight into community
resources that may link you to a patient who
is lost to follow-up. When standard attempts
to contact a patient regarding a LTFU
appointment fail, additional strategies may
include: Contacting the primary care provider
 Contacting the last known employer
 In the U.S., checking the Social Security
Death Index (http://ssdi.rootsweb.com/) todetermine if the patient is deceased Contacting next of kin, if contact
information is available
 Utilizing professional tracking agencies
Individual institutions will need to determine
HIPAA and other compliance factors related
to tracking patients, and set their own limits
as to how many “reminders” are acceptable
before assuming a patient is “lost to follow
up”. Some centers send a letter to “lost”
patients stating that there is no longer apatient-provider relationship as a result ofmultiple missed or cancelled appointments.
(This decreases the risk of the LTFU clinic
being accused of “abandonment of care”).
Always become familiar with and follow yourinstitution’s policy regarding release of
medical information prior to contacting
anyone other than the patient directly.

40Section 3: Delivering LTFU CareBILLING AND FINANCIAL ISSUES“We feel our survivors should begin to assume responsibility for theirhealthcare, and this includes knowing the extent of their insurance
coverage. Within our appointment confirmation letter are instructions tocheck level of coverage with their insurance carrier, prior to their annual
long-term follow-up visit. We teach patients that they need to call the 800
number on the back of their insurance card, and inquire as to whether our
clinic is within their 'network' and whether services will be reimbursed.”- Marcia Leonard, RN, PNP
Coordinator, LTFU Clinic, University of Michigan

atient billing and reimbursement issues
are directly related to the type of healthcare
system with which the LTFU clinic is
associated.
For institutions located incountries
withuniversal
healthcare
coverage, and for institutions that receive
philanthropic or research funding to support
their LTFU services, these issues may not
be relevant. However, for the majority of
institutions in the United States, billing andfinancial issues are often the determining
factors in survivor access (or lack thereof) to
the LTFU clinic and associated screening
tests and subspecialty care.
Coding/Billing
In order to seek reimbursement frominsurance carriers in the United States,
clinics must first generate a diagnosis code
(ICD-9-CM; International Classification of
Diseases, 9th Revision, Clinical Modification)
for the visit; most commonly this is thesurvivor’s cancer diagnosis (e.g., leukemia).
All services performed are then billed using
CPT (Current Procedural Terminology)
codes.
In addition to use in federal programs(Medicare and Medicaid), CPT is used
extensively throughout the United States as
the preferred system of coding anddescribing healthcare services. CPT codes
differentiate between levels of service andincorporate
physicalexamination,
evaluation, treatments, conferences with orconcerning patients, preventive pediatricand adult health supervision, and similar
medical services, such as the determinationof the need for and/or location of appropriatecare. There are strict criteria that define thecomplexity level of an outpatient clinic visit.
The highest level translates to the highest
patient bill, and the greatest reimbursement
to the clinic/hospital.
Reimbursement generated directly for theclinic is almost exclusively derived fromclinician billing, which should be done
utilizing the highest levels of available billing
codes, with consideration given to:






Time spent reviewing referrals
Physical exams
Consultations
Documentation
Referrals to additional subspecialists

Meeting with billing specialists from both thefacility and professional billing departments,
as well as with specialists in the medical
coding offices will help to ensure that theclinic or institution will receive the maximum
potential reimbursement.

41Section 3: Delivering LTFU Care

Reimbursement Issues

Reimbursement Issues for NPs

Those familiar with the comprehensive (and
often-lengthy) clinic visit required for LTFU
care understand the amount of time andeffort necessary to ensure that the patient
receives high quality care.

The rules and regulations for NP practicevary from state to state. The Pearson
Report provides a comprehensive summaryof each state’s practice realities andhealthcare practice specifics. Each center
should determine how NP billing should be
handled in light of their current state
regulations. The Pearson Report is updated
annually; the 2007 version can be accessed
on-line at

To offset the costs associated with
developing and running a LTFU program, it
is important to consider the potential
reimbursement
generatedfortheclinic/institution.
Some of the tests orprocedures commonly required during anevaluation include:








Lab work (blood, urine)
Echocardiogram
EKG
Audiogram
Neuropsychological evaluation
Pulmonary function testing
Chest x-rays

These tests, although not directly revenuegenerating for the clinic, do generate
revenues for the institution, especially ifdone “in network.”

http://www.webnp.net/images/ajnp_feb07.pdf

Conclusion
A Long-Term Follow-Up Program is auniquely different entity than a standard
hematology/oncology
outpatient
clinic.
Clinic preparation, clinic visits, and follow-up
are labor intensive. When launching a newprogram, phasing the program in at areasonable pace and obtaining thecommitment of key personnel can be
instrumental in establishing a successfulprogram.

42Section 4: Survivorship Research

SECTION 4:
SURVIVORSHIP RESEARCHEDITOR:
Kathleen Meeske, RN, PhD
Assistant Professor, Keck School of Medicine
University of Southern California
Director, Health Outcomes and Cancer Control Research,
HOPE Program, Childrens Center for Cancer and Blood Diseases
Childrens Hospital Los Angeles, Los Angeles, California

43Section 4: Survivorship Research

CANCER SURVIVORSHIP RESEARCH“Cancer survivorship research encompasses the physical, psychological, andeconomic sequelae of cancer diagnosis and its treatment among both pediatricand adult survivors of cancer. It also includes within its domain, issues related
to healthcare delivery, access, and follow-up care, as they relate to survivors.
Survivorship research focuses on the health and life of a person with a historyof cancer beyond the acute diagnosis and treatment phase. It seeks to bothprevent and control adverse cancer diagnosis and treatment outcomes, suchas late effects of treatment, second cancers, and poor quality of life, to provide
a knowledge base regarding optimal follow-up care and surveillance ofcancers, and to optimize health after cancer treatment.”- NCI-Office of Cancer Survivorship, 2004

he advances in the treatment ofchildhood cancer over the past four decades
and the resultant increases in rates ofsurvival can largely be attributed to apediatric oncology ethos that highly values arigorous scientific approach to the care ofchildren with cancer, including careful
evaluation of treatment regimens throughcollaborative
research.27
Cancersurvivorship research in pediatric oncology(research focused on long-term survivors ofchildhood cancer) has allowed us toanticipate
certainorgan-specificcomplications,potential
secondarymalignancies, and psychosocial issues.15
Much research is still needed to refinechemotherapy regimens that will minimize
late effects without compromising survival
rates, as well as to determine effective
interventions for screening and managing
late effects.28-30
Cancer survivorship research is a formal,
systematic approach to both identifying andexamining the various late complications ofchildhood cancer.31, 32 Whether the focus ofa specific research study is a physical,
psychosocial, or care-delivery issue, theoverall objective of cancer survivorshipresearch is to improve medical outcomesand enhance quality of life in cancer
survivors. As an integral part of acomprehensive LTFU program, cancer
survivorship research is an important meansof identifying measurable outcomes, andfurther supports the need for comprehensive
survivor
programs.
Ideally
cancersurvivorship research is collaborative innature, but often the research process
begins with smaller descriptive studies
conducted at a single institution.
Survivorship research is characterized byfocus and usefulness. Some common areasof focus in survivorship research include:
Research Focus

ExampleDisease Childhood brain tumor

Treatment exposure Cranial radiation

Age group Adolescents

Concept Uncertainty
 Decision-making

Symptom Fatigue
 Cognitive impairment

44Section 4: Survivorship Research

Research about late effects
childhood cancer can be used to:following Build a body of knowledge Build evidence-based
pediatric oncology

practicein Improve outcomes for childhood cancer
survivors

 Improve treatment and outcomes for
future pediatric oncology patients
Ultimately, research regarding late effects
can be used to improve the cancer
experience and a wide range of outcomesfor people who have been treated forchildhood cancer and for their families, aswell as for those children who will bediagnosed and treated in the future.

45

Section 4: Survivorship Research

IDENTIFYING RESEARCH PRIORITIES
urvivorship research has been carriedout on a wide range of subjects, including
cognitive issues in patients following cranialradiation, risk of breast cancer in patients
who have received mantle radiation for
Hodgkin lymphoma, and quality of life inchildhood cancer survivors. There are still
many topics to be explored. For instance,
we have a very poor understanding of how
cancer treatment affects the normal aging
process. Ultimately, ongoing identification ofresearch priorities will be critical to
improving the quality of care for long-term
survivors of childhood cancer; however,research priorities will vary among LTFU
programs depending on multiple factors,
including institutional resources, populationand expertise. Things to consider whenidentifying research priorities include:
Research Focus:
 Is the problem significant?
 Will this research contributeknowledge to the field?

new Is the topic of genuine interest to theresearcher?
Feasibility:
 Can the question be answered?
 Is this a moral or ethical problem forwhich there is no right or wrong
answer, but rather an opinion?
 Can the problem be studied in theallotted time frame?
 Can enough subjects be accrued within
the time constraints?

 Will subjects be willing to comply withstudy requirements?
What facilities and equipment will beneeded and are they available to theresearcher?

 Is funding available?
 Are the budgeted costs appropriate fortheexpectedprocedures
andmanpower necessary?
Research Team: Does the researcher have sufficientknowledge and expertise in this area?
 Is the researcher familiar with the
instruments that will be used to collectthe data?
 Does the problem require expertisefrom multiple disciplines (such as
nurses, physicians, psychologists,social workers, child life specialists,
dietitians, neuropsychologists)?
Regulatory Issues:
 Are there measures in place to protect
the patient’s rights and privacy?
 Will the Institutional Review Board(IRB) have any problems with the study
design (particularly in the area of
ethics)?
 If the sample includes children, willparents be willing to allow their children
to participate?
 What is the process for re-addressing
consent as minor children reachadulthood?

46

Section 4: Survivorship Research

CONDUCTING SURVIVORSHIP RESEARCH
n institutional electronic clinicaldatabase is an essential element to beconsidered when establishing a program ofcomprehensive LTFU care.
Electronicclinical databases for long-term survivor
programs may be an extension of the clinicaldatabase that already exists in theinstitution’s general pediatric oncology ortransplant program.
If there is not an
existing electronic clinical database for the
institution’s pediatric oncology program,creating a basic LTFU database should be
an initial goal of the LTFU program.
Clinical Databases Set the Stage forCancer Survivorship Research
Microsoft Access® and Microsoft Excel® arewidely available user-friendly software
programs that can be used to enter,summarize, search and analyze clinical dataand support survivorship research. A
feasible and generally useful clinicaldatabase is comprised of basic elementsthat can be queried to identify persons whoare potentially eligible for a study. For
example, one could query for the number ofpatients who have a specific diagnosis, arewithin a specific age range or are a specificnumber of years off therapy, etc.
Developing a Clinical Database
Basic elements of a clinical database thatcan be used for survivorship research
include: Demographic data: Name, date of birth,
gender, race/ethnicity and contact
information (address, home and/or work
telephone, cell phone and email for boththe survivor and an alternate contact, i.e.,
someone who will always know where
the patient can be reached). Complete
current contact information is critical toboth quality clinical care for long-term
survivors and to reduce potential
sampling bias in cancer survivorshipresearch.

 Disease-related data: Childhood cancer
diagnosis, date of diagnosis, diseasestage, and significant histological andbiochemical features.
 Treatment-related data: May include
dates of initiation and completion oftherapy, therapeutic exposures, andspecifics regarding treatment, such asradiation fields and doses, cumulative
chemotherapy doses, etc.
 Clinical outcomes: May include resultsof tests and procedures, known lateeffects, and an objective rating of lateeffect severity per the Common Toxicity(CTC) criteria.
 Other program-specific data: May
include data specific to specialized
programs, such as neuro-oncology ortransplant evaluation measures.
Other considerations in the development
and maintenance of a high quality
institutional database for long-term follow-up
include: Who will be included in the database?
When starting a LTFU program, theemphasis should be on enrolling longterm survivors in the database. While
ideally patients would be entered into the
database at diagnosis so treatment
exposures can be tracked and entered inreal-time, few institutions have sufficient
resources to do so. For most programs,
the initial step may be either enrolling
patients attending the LTFU clinic, orentering all patients at the institution
when they complete active therapy. The
latter is preferable, for this allows adetermination of the entire population ofsurvivors at the institution, and not justsurvivors who attend the LTFU clinic.
 When will data be collected? Medical
record abstraction and data entry cantake place in advance of the patient’s
visit, with review and update of the47Section 4: Survivorship Research

information (especially the patient’s
contact information and information about
actual late effects and their severity)
being done at the clinic visit.
For
returning patients, especially for lateadolescent and young adult survivors
whose care has been transitioned to an
adult oncology or primary care provider,changes in demographic information(name, address, telephone numbers,
email address) and late effects or otherdata elements can be updated at thestart of the annual clinic visit, or during a“virtual” visit by phone or mail for those
who are not seen in person on an annual
basis.
 How can quality data collection beassured? Rigorous training in medical
record abstracting, patient interviewing
and data entry for all personnel who will
be engaged in these activities isfundamental to the development of acomplete and accurate clinical databasethat can be useful for research.
Developing systems for updating contact
information is critical if quality research is
to be conducted in your LTFU program.
Study results are potentially biased if alarge number of patients cannot belocated and included in the study.
 How will the data be collected? There
are several potential methods for datacollection in LTFU programs. Possibilities
include:- Patients complete standardized paperand-pencil data collection forms prior totheir LTFU visit (see Appendix 3 forsample clinic intake forms)- A clinician elicits and records
information
duringtheclinicalinterview using standardized datacollection forms- Patientsorinterviewers
enterresponses directly into a computerized
database- Data are collected by mail or
telephone surveys or through inperson interviews conducted outsideof the standard LTFU clinicalencounter. This type of data collection
may be preferable if there arecompeting demands for time andspace in the clinical setting- Whatever data collection method isselected for use in developing theclinical database, it should be usedconsistently to allow meaningfulcomparisons between patients orgroups of patients over time
 Who
will
provideinformation?
Survivors age 18 and over can generally
respond for themselves, unless they are
cognitively impaired or developmentally
unable to complete the forms. Younger
survivors may complete age-appropriate
forms with parent/guardian consent.
Familymembers
can
be
proxy
respondents for children too young tocomplete the forms and for thosesurvivors who are cognitively impaired ordevelopmentally delayed. For survivors
being screened for problems withmemory, attention, or psychologicaldistress, the perspective of the parent or
spouse may be essential.

"We designed a very basic Excel® database when we started ourLong-Term Follow-up Program. We were fortunate to have a
medical student join us for a summer. He upgraded our system
while keeping it user-friendly."- Kathy Meeske, RN, PhD
HOPE Program, Childrens Hospital Los Angeles

48Section 4: Survivorship Research

Regulatory Issues
An essential component of developing
institutional data collection procedures isobtaining Institutional Review Board (IRB)
approval (or the approval of a similar
regulatory oversight body).
Generally,clinical databases developed solely to trackpatient visits, capture other clinicalinformation, and improve patient care do not
require IRB approval as long as the data are
stored and utilized only for clinically related
matters. However, if the healthcare provider
plans to use the clinical database to answer
research questions that arise over time, then
IRB approval is required. Therefore, it isimportant to consider submitting an IRB
application for general data collection at thetime you are developing the clinical protocol
for your LTFU program. The essential
components of an IRB application include: Specific protocol to be followed forcollection of personal health informationthat will be entered into the database Sample recruitment materials (e.g.,
letters or telephone scripts) that will be
used when contacting potential researchsubjects to introduce a study Identification of specific members of theresearch team who will have access tothe data, along with assurance from theprincipal investigator that all members of
the research team will have training in
IRB and HIPAA regulations
 Explanation of the research questions
and protocol to be followed for datacollection in layman’s terms
 IRB approvals from other institutions (ifthere are research partners/collaborators
outside of your institution)
 Consent documents for:- Participants 18 years of age or older- Parents/guardiansofparticipants
under 18 years of age- Participants between 7 and 17 years ofage (assent form documenting theminor’s willingness to participate)- Patients previously consented asminors, who have turned 18 during thecourse of the research or datacollection
Although you may have a clinical databasefor your LTFU clinic, you generally cannot
access this patient data for researchquestions unless specific consent isobtained.
It is recommended that you
consult with your IRB concerning yourinstitution’s requirements for researchdatabases. In addition to IRB consents, you
may need to obtain Health Insurance
Portability and Accountability Act (HIPAA)
consents for each element of personal
health information (PHI) that can be madeavailable to those not directly involved in thepatient's care, including the research teamor others involved in the study.
Consider submitting and obtaining an IRB
approval from your institution for generaldata collection and follow-up of your patient
population. For example, you can submit an
IRB application requesting survivor consent
to store his/her demographics, diseasecharacteristics, treatment received andidentified late effects, making it available(without patient identifiers) for future
analyses.
In summary, although you may not have a
specific research question in mind at thetime you are developing your survivorshipclinic, in recognition that research is an
essential part of improving the care of thisat-risk population, consider developing ageneral research protocol that would allow
you to store data that can be used to answer
questions that may arise over time.

"The IRB at our institution asked us to develop a standard operatingprocedure (SOP) for our database. In the SOP, we had to address
issues such as database security and access. I would recommendthat you meet with a representative of your IRB, as regulations
regarding databases are evolving rapidly and are institution-specific."- Kathy Meeske, RN, PhD
HOPE Program, Childrens Hospital Los Angeles
49Section 4: Survivorship Research

Research Opportunities within COG
One of the first steps in incorporating
survivorship research into a new LTFU
program may be the implementation or
facilitation of late effects studies that areopen within COG.
Your program may
participate in COG late effects research by
opening a new late effects study and/or
facilitating accrual on a study that is alreadyopen at your institution.

Current COG late effect studies that areopen to patient accrual are listed in Table 6
and also can be accessed on the Children’s
Oncology Group member website athttps://members.childrensoncologygroup.org(click “Protocols” and then “LTE”). Obtainspecific information regarding a study’s
eligibility and methodology by downloading
the protocol from the COG website.

Table 6: Currently Open COG Late Effects Studies*
PROTOCOLTITLEDATE OPENED

ALTE02C2

Neurobehavioral Outcomes inChildhood ALL

May 2004(Limited institutions)

ALTEO3N1

Key Adverse Events after Childhood
CancerMarch 2004
(Groupwide)

ALTEO4N1

Health Related Outcomes for Hodgkin
Disease Survivors

October 2004
(Limited institutions)

NWTSG 4941L

National Wilms Tumor Late Effects
Study

October 1995
(Groupwide)

ACNS0331

Newly Diagnosed Standard Risk
Medulloblastoma: Limited Target
Volume Boost Irradiation & Reduced
Dose Radiotherapy and Chemotherapy

June 2004(Groupwide)

ACNS0221

Conformal Radiation in Low-Grade
GliomasNovember 2005
(Groupwide)

AALL0331

Standard Risk B-precursor Acute
Lymphoblastic Leukemia (includes
longitudinal assessment of healthrelated quality of life)

April 2005
(Limited institution for
HRQL component)

AOST0331

A Randomized Trial of the Europeanand American Osteosarcoma Study
Group to Optimize Treatment Strategies
for Resectable Osteosarcoma Based on
Histological Response to Pre-Operative
Chemotherapy

November 2005
(Groupwide)*As of September 200750

Section 4: Survivorship Research

The Research Process
Clinical practice can spark potential areas ofinterest in survivorship research; forexample, observation of a pattern of multiple
occurrences of a distressing symptom inpatients or their family members, or a desire
to identify or establish an evidence base forcurrent practices or practice improvements.
Other sources that can inspire potential
areas of interest are the scientific literature,
calls for applications for grant funding in anarea related to long-term childhood cancer
survivors and/or late effects, previous workin programmatic survivorship research aboutlate effects or other issues of relevance tolong-term childhood cancer survivors, andstrategic thinking about future programmatic
research.
Steps in the Research Process
The following are essential steps to follow
when designing and conducting your own
research study.33-35 A flowchart summarizing
this information is presented in Figure 1.
1. Define the research question.
Determine a general topic or clinical problem
and then discuss your ideas with others,
narrowing the focus to a specific researchquestion. Consider the potential implicationsof findings related to this research: Is thisquestion worth your time and effort to study?
Is it a new idea? How will patients orhealthcare professionals benefit from yourresearch?
2. Review the literature. Determining what
is known and identifying gaps in theliterature are critical in the development of a
research project.
Reviewing previous
studies helps the investigator identify asuitable framework for the study, which inturn guides the selection of relevant
variables and suitable methods andmeasures. The process of conducting theliterature review also may present an
opportunity for developing a review or
clinical paper for publication.

3. Refine the research question anddevelop a research concept. Based on
the literature review, the research question
may need further refinement. Once this isaccomplished, it is a good idea to write up abrief research concept proposal and havethis reviewed and approved by theindividuals whom you have identified as key
to the success of your project. In someinstitutions, a research concept may berequired as part of the formal approval
process. Feedback from this process will bevaluable as you develop your research
proposal.
In order to obtain meaningful analysis, somecancer survivorship research requires larger
numbers of survivors than may be available
at a single institution. For example, arandomized control trial (RCT) assessing theoutcomes of a specific intervention incomparison to those who receive “standardof care” would normally require multiinstitutional recruitment because, for thisresearch design, the sample size must belarge enough to allow the detection of astatistically significant difference between
the two groups, if one exists.
The
researcher could collaborate with clinicians
and scientists at other centers and/or use apre-existing database to recruit for the study.
4. Develop the research protocol. The
research concept should now be used as aplatform for development of the full research
protocol which should include title, abstract(summary), background, aims/objectives,
hypothesis, eligibility criteria, conceptual
framework,
study
design,sampling,
variables, statistical analysis, identification of
study measures and instruments, ethicalconsiderations, risks and benefits, anddetermination of the composition of yourresearch team.
Adding research expertise to your team is
key to developing the research question(s)and methods. The type of expertise that will51

Section 4: Survivorship Researchbe needed to conduct a study becomes
clearer as the research topic and questions
evolve. Bring together a core team ofexperts in key areas. The study will develop
further based on the interests andperspectives of the various experts whoform the research team. The research teamshould include individuals from multiple
disciplines who have essential andcomplementary skills including study design,theoretical frameworks, statistics, database
design and programming, grantsmanship,
and clinical expertise.
Considerations for institutional support may
include access to populations of interest andpotential research participants, existing
systems for obtaining, processing andstoring research data (including tissue
samples and medical record information),and availability of research office space andclinical facilities (including a private area forobtaining informed consent and conducting
data collection).
5. Develop a budget and identify funding
sources. Institutional and financial support
are also important for the development ofsurvivorship research within a program ofcomprehensive LTFU care for childhood
cancer survivors. Consider both internal andexternal sources of funding. Potential
funding sources are listed in Table 7.
6. Prepare and submit your IRB
application. Once the research plan is inplace, you should proceed with the processof obtaining regulatory approval to conduct
the study. Many funding agencies will not
release funds until there is IRB approval forthe research project.
7. Collect your data. Follow the plan
approved by your IRB to collect your data.
Be sure measures are in place to assure
data security and confidentiality.
8. Analyze your data. Perform thestatistical analysis as outlined in yourresearch plan and then interpret yourfindings.
9. Report your results and disseminate
your findings. Prepare manuscripts for
submission to scientific journals, poster
abstracts, and conference presentations.
Let the world know the results of yourresearch!

"We recently published a case report because the lateeffect we detected in a long-term survivor of childhood
cancer had not been previously reported in the literature."- Mary Nelson, RN, MS
HOPE ProgramChildrens Hospital Los Angeles

52Section 4: Survivorship Research

Figure 1: Development of a Research ProjectInteraction withcolleagues

Clinical PracticeResearch Question

Review Literature

Consider writing
a review or
clinical practicearticleRefine Research Question

DevelopResearch Team

Develop Research Proposal
Aims/objectives
Hypothesis
Conceptual framework
Study design
Sample:Define eligibility and sample size
Study variables:
Identify/define how/when eachvariable is measured
Data analysis plan
Ethical considerations
Risks/benefits

Develop Budget
Identify Resources:- Internal- External

Develop and submit
IRB Application

Collect data

Analyze data

Report/disseminate results
53Section 4: Survivorship Research

Table 7: Examples of Potential Funding Sources for Survivorship Research

Professional Organizations
 Oncology Nursing Society www.ons.org
 Sigma Theta Tau www.nursingsociety.org
 National Association of Pediatric Nurse Practitioners www.napnap.org
 Association of Pediatric Hematology Oncology Nurses www.aphon.org
Institutional Fellowships (e.g., St. Jude EBM fellows, Research Scholars) Departmental research awards
 P20, P30, P50-funded Center pilot studies program NCI Comprehensive Cancer Center pilot studies program
Private Agencies and Foundations
 American Cancer Society Lance Armstrong Foundation
 Hartford Foundation
 National Brain Tumor Foundation
Corporations
 Computer hardware and software Pharmaceuticals
 Electronic devices
 Healthy lifestyle
Government
 National Cancer Institute (NCI) www.cancer.gov
 NCI Office of Cancer Survivorship http://dccps.nci.nih.gov/ocs
 National Institute of Nursing Research (NINR) www.ninr.nih.gov- Career development awards (K-level awards)- R-level awards (for example R01, R03, R21)
 National Institute of Health (NIH) Research Training Opportunities:- National Research Service Award (NRSA) http://grants.nih.gov/training/nrsa.htm(individual and institutional; pre- and post-doctoral)- National Heart Lung and Blood Institute (NHLBI) www.nhlbi.nih.gov
Cooperative Clinical Trials Groups
 Children’s Oncology Group (Nursing Traineeships)
https://members.childrensoncologygroup.org/Disc/nursing/default.asp

54Section 4: Survivorship Research

Other Research Considerations
Secondary Analysis. If the researcher
wants to answer a question from previously
collected data, gaining access to the preexisting database is necessary. Several US
databases exist that may offer access to
information about survivors of childhood
cancer, including: Surveillance Epidemiology and End
Results (SEER) [http://seer.cancer.gov]
is an NCI resource that collects andpublishes cancer incidence and survival
data from 18 population-based cancer
registries covering approximately 26
percent of the US population.

 The Children’s Oncology Group (COG)

Building Research Partnerships
Partnerships and cross-institutional collaboration are important because of the relatively
small number of childhood cancer patientsand survivors at most institutions. Sharing
ideas with colleagues between and acrossinstitutions facilitates successful completionof research projects. The novice researcher
should consider initiating a small working
group with other colleagues from which pilot
data can be obtained. The researchers canthen build on their collaborative data, andpotentially expand the project to include
additional sites, or in some instances,
expand to a COG or CCSS group-wide
project once feasibility has been worked out
in the smaller group setting.

[http://members.childrensoncologygroup.org]

is a National Cancer Institute (NCI)
supported cooperative clinical trials groupthat conducts multi-institutional studies
and can provide access to previously
collected data for secondary analysis.
COG investigators must submit a
research proposal to the appropriate
study committee (e.g., Late Effects,
Cancer Control, Nursing) for review andapproval in order to access COG data.
 Childhood Cancer Survivor Study(CCSS) [www.stjude.org/ltfu] is an NCIfunded resource established to promoteand facilitate research regarding longterm survivors of childhood cancer.
CCSS has enrolled 14,370 five-year
survivors of childhood and adolescentcancer diagnosed between 1970 and1986 and a sample of 3,737 sibling
controls.
Enrollment of a more
contemporary cohort is currently inprogress. CCSS has detailed information
on cancer diagnosis, therapy received,
and health/quality of life.
The CCSS
dataset is a resource that can be used toinvestigate questions regarding quality oflife and late effects of therapy inchildhood cancer survivors. Additional
information regarding the process bywhich qualified investigators can accessthe CCSS dataset is available by emailing ccss@stjude.org.

 Internal and external partnerships
A group of researchers within or between
institutions with a similar area of interest,
but often with different areas of researchexpertise, who regularly schedule
conference calls or meetings tobrainstorm ideas for research and toshareopportunities
forfunding,
publication, leadership, and teaching.
 Clinical partnerships
Clinical partnerships are an effective wayof promoting research within institutions
that
have
different
requirements
regarding time dedicated to clinical andresearch responsibilities. A clinician who
is interested in conducting survivorship"A physician and nurse team in survivorship may have an interest in
examining AVN, and may require a larger sample than that available
within their own institution. They may want to seek collaboration withanother institution that has resources to assist in conducting this study."- Sheila Santacroce, APRN, CPNP, PhD
HEROS Program, Yale University
55

Section 4: Survivorship Researchresearch but has a great deal of clinicalresponsibility could partner with others
who have more dedicated time for
conducting
research.
Clinicalpartnerships
may
work
well
for
multidisciplinary
researchstudies(studies involving multiple disciplines,
such as nursing, medicine, social work,
psychology, and/or neuropsychology).
For example, examination of the various
psychological effects of cancer requires
expertise in identifying these issues, andsupport from physicians and nurses who
follow these patients and families during
treatment. Another example may be thesurvivorship nurse who wishes to
conduct a research study and who mayneed to seek clinical/research expertisefrom psychology in order to examine
coping and adjustment in cancer
survivors.
Conclusion
Cancer survivorship research has thepotential to decrease physiologic andpsychological morbidity in childhood
cancer survivors by addressing specificissues that have an impact on health andquality of life in this vulnerable
population. LTFU clinics should strongly
consider incorporating research into theirprogram, in order to contribute newknowledge and insights that may
potentially improve future outcomes forchildhood cancer survivors.

.

"A person with heavy clinical responsibilities is still able tocontribute to the research project by recruiting study
participants from their institution, participating inconference calls about the progress and findings of thestudy, and assisting with manuscript revisions."- Sheila Santacroce, APRN, CPNP, PhD
HEROS Program, Yale University

56Section 5: Issues in Survivorship

SECTION 5:
ISSUES IN SURVIVORSHIPEDITOR:
Scott Hawkins, LMSW
Pediatric Oncology Social Worker
Helen DeVos Children’s Hospital, Grand Rapids, Michigan

57Section 5: Issues in Survivorship

ADVOCACY
arents and patients must learn toadvocate for themselves in order to navigate
through a lifetime of survivorship issues.
Ideally, parents and patients should learn
advocacy skills throughout their treatment.
However,advocacy
issuesbecomeessential in survivorship, since parents andpatients must address important issues as
they arise. 5, 36, 37“If I didn’t know how to advocate formyself, I would not have received the
mammogram I really needed as a survivor
who had mantle radiation. My doctor said I
did not need a mammogram until I was 40
years old. I insisted on a test that could
possibly save my life. I was able to do thisbecause I was educated and confident.”- Angie, Survivor

Developing Advocacy Skills
Successful advocacy begins with education,
because when parents and patients become
equipped with an understanding andacceptance of survivorship issues, they
become confident enough to advocate forthemselves. Suggestions for assisting
survivors to develop advocacy skills include: Make parents and patients aware that
advocacy is a necessary skill, and onethat will enhance survivorship Discuss advocacy, including how andwhy to be a personal advocate, during
the initial LTFU visit
 Include the following in each subsequent
LTFU visit:- Discussion and assessment of
advocacy skills- Discussion of survivorship issues- Psychosocial support- Distribution of information andresources

Essential Skills
Four basic self-advocacy skills have beenstudied and identified as essential.
Information-seeking
Communication
Problem-solving
Negotiating

These skills should be taught throughout
treatment and evaluated during visits to the
LTFU clinic.38 It is important for survivors tobe proactive in developing these selfadvocacy skills in order to maximize theiroverall health and well-being throughout thecancer experience.
Advocacy: What, Why, How?
Parents and patients may know intuitively
that they should advocate for themselves.
However, many do not understand the typesof advocacy, why advocacy is necessary inorder to navigate through survivorship
successfully, and how they can become aneffective advocate. An important goal for
LTFU clinics is to educate survivors andtheir families so that they are able to makeknowledgeable decisions about the futurethat are in their best interest.
“I knew I should stand up for my child, but
I would not call myself an advocate. To me,an advocate was someone who stands up
for legal or financial rights. It took me awhile to learn the broad scope of advocacy
and what it meant for me and my child.”- Mary, Parent

Characteristics of a successful advocate.
First and foremost, an advocate cares about
the overall well-being of the survivor,
regardless of whether the advocate is aparent or a survivor. Overall well-being
includes both physical and psychosocial
issues. An advocate must be willing to ask
questions, proactively seek out information,and take some positive risks that will lead to58Section 5: Issues in Survivorshipgreater benefit in the future. Not all patientsand parents will embrace advocacy in thesame way or to the same degree, but
fundamental education and advocacy arenecessary for all survivors. It is also
important to note that an advocate who
stands up for an individual survivor is also
advocating for childhood cancer survivors ingeneral. The more educated the population,
the easier it will become for future survivors
to function.
Unfortunately, advocacy sometimes means
stepping out into an area that others have
not yet explored. An advocate may
experience challenges along the way, suchas healthcare professionals or insurancecompanies that are unaware of certain
issues that survivors face. Because
advocacy can at times be frustrating anddiscouraging, it is important for LTFU clinic
staff to support advocacy efforts. The clinic
should serve as a safe foundation whereparents and survivors can develop advocacy
skills. Part of this encouragement should
include pointing out that advocacy skills canbe used beyond the childhood cancer arena.
The education and skills developed for
advocacy related to survivorship can also be
applied in other situations that arise, both atwork and at home.
Types of advocacy. While each institution
has its own interests in mind, parents andpatients should be educated regarding
national and local childhood cancer issues
and initiatives. Encourage parents andpatients to get involved on a national, local,
and personal level. Make them aware of
programs available to discuss important
issues such as, but not limited to,volunteering,fundraising,laws
andlegislation, treatment choices, and wellness
issues. Networking serves to connect
survivors and their families to a much bigger
picture, which in turn often allows them tofind meaning and purpose in theirexperiences. A list of organizations thatprovide information and advocacy forsurvivors is included in Table 8.

Promoting advocacy. Promote advocacy
skills for patients and/or parents during
LTFU clinic visits. For example, structure
clinic visits to allow time for questions anddiscussion, and for dissemination of
information that will promote a better
understanding of survivorship issues andways in which to advocate. Establish anenvironment that is consistent, up-to-date,and comfortable. Develop a “library” ofresources, including web-based technology
if possible, so that parents and patients haveaccess to information that they might nothave the tools to access at home. Make the
LTFU clinic a “home base” from which otherresources and specialists can be accessed.
Parents and Patient Advocates
Depending on age, diagnosis, andtreatment, survivors of childhood cancer
may be too young or cognitively impaired to
advocate for themselves. Therefore, begin
survivorship education by teaching parents
to advocate for their children. Parents may
in turn teach their child the skills of
successful self-advocacy.
“I needed to feel like there was time for me
to just talk about the issues, feelings, andstruggles we were facing but not
expecting to face, following treatment.
Now that she was out of immediate
danger, I just wanted a chance to talkabout what we had been through and what
was ahead for us.”- Arlene, Parent

It should also be noted that parents andpatients will have unique perspectives andpossibly different goals in mind for the
future. Therefore, teaching parents andpatients
toachievedevelopmentally
appropriate independence may be one of
the essential skills taught to both parent andpatient. Professional assistance may beneeded to assist with the transitions that
occur in the relationship between parent andpatient, especially as the patient becomes
more independent.

59Section 5: Issues in Survivorship

Parents and patients should also be madeaware of the unique advocacy opportunities
available to each of them. A parent may
desire to be much more or less involved in
the childhood cancer survivorship arena
than the survivor, or vice versa. Therefore,both patient and parent should be equally
addressed and given ample and unique
opportunities to become involved.
Common Survivorship Issues
An aspect of LTFU clinics that should ideallybe separate from the medical aspects of theclinic is built-in time for discussion andprocessing. The long-term follow-up phaselacks the kind of intensity present during
active treatment, but does carry a different
sort of intense emotional and physicalexperience that can many times be eased
through discussion and processing.
Life Immediately Beyond Treatment
Survivors should be educated about thepossible physical and emotional issues
facing them and their families soon after
treatment. These issues can be unique andseparate from those issues survivors face
further out from treatment.
Anxiety: Patients and their families expect
and are expected to be thrilled with finishingtreatment. However, the thrill of finishingtreatment is most often mixed with anintense anxiety when faced with the idea of
no longer actively “fighting” the disease.
Addressing this issue is an important step increating a strong foundation for future
mental and emotional stability.
Returning to Normalcy: Parents should be
educated regarding the frustration, anxiety,and depression felt by patients andmembers of their family when a realization ismade that “back to normal” may not be apossibility and that a “new normal” mayneed to be established.
Physical Effects: Immediately following
treatment, parents should be informed about
what to expect for their child in terms ofphysical condition and ability. At this time,parents should be made aware of immediateside effects of treatment as well as possible
long-term effects.
Future Issues: Long-term follow-up clinics
should also point out to survivors thatphysical and psychosocial effects oftreatment are sometimes delayed and do
not present themselves until many years
after treatment. Addressing this possibility
up-front, frankly and openly, prevents
survivors and their families from feeling they
are “weird,” “weak,” or “going crazy” whenissues arise at a much later time.
“I hit a huge amount of stress and had
a scare that the cancer had come backand suddenly everything that I’d beenlocking up for the past 4.5 years (sincetreatment) came out. This goes somuch deeper than you realize, and it’s
important to have a professional,
outside perspective to help you stay on
top of your mental /emotional health.”- Kara, Survivor

Long-Term Psychosocial Issues. Dealing
with a lifetime of psychosocial issues might
be both unexpected and overwhelming toparents and survivors. Parents who
advocate for their children find themselves
dealing with their own emotions, as well as
assisting their child in dealing with their own
issues. Appropriate support and educationon the emotional issues related tosurvivorship should be made available toparents for their own use as well as for theuse of their child. Parents and patients mayneed to be made aware of the possible
issues through discussion, and they should
also be given the opportunity to express
concerns at each clinic visit. Specific issues
that need discussion are as follows:
Post-Traumatic Stress Disorder: Survivors
and their families should be made aware of
the signs and symptoms of PTSD. A
discussion of the possibility of this issue may
avoid the added stress survivors and/or theirfamilies may feel if they are unaware of thisissue and simply feel they are “going crazy.”60

Section 5: Issues in Survivorship

Fear of Late Complications:Somesurvivors may remember hearing about apotential late complication from their doctor
when they were in treatment, or they may
know or have heard about other survivors
developing physical late effects, such ascongestive heart failure or second
malignancies, years following treatment.
The fear of developing a new health problem
may sometimes lead to avoidance of longterm follow-up appointments in the hope thatnew problems will not be “discovered”. It is
important to help survivors understand thatparticipating in long-term follow-up will notcause complications to happen, and that
regular long-term follow-up allows thesecomplications to be caught early, when they
are most treatable.
“I didn’t come to the long-term follow-up
clinic for a very long time. I thought ‘I am
done with that – I’ve paid my dues – I don’t
want to know if anything else can gowrong.’ I was really scared that theywould find something seriously wrong
with me, and that I just couldn’t facehaving to deal with that, so I thought I
would just take my chances.
. . . But then, gradually, I began to realizethat if I didn’t take charge, the cancer andeverything I had gone through was goingto take charge of me. Because it wasalways there, in the back of my mind, and I
was always worried about what might
happen. So I finally went in for a visit, andnow I know the risks that I face. And I
actually feel better knowing that, because
now I have a plan to deal with it, and I
know the things I can do to keep myself as
healthy as possible. And if anything doesgo wrong, they’ll catch it early, and I’ll
have a better chance of beating it. So, I
never miss my appointments anymore.”- Laura, Survivor

Fear of Recurrence: Possibly the most
universally talked about “issue” facing
survivors is a very intense, sometimes
debilitating fear of their cancer coming back.
Parents and survivors should have thediscussion,
support,andinformation
available to them at LTFU clinics to address
this fear. This is one area in particular where
the “voice” of other survivors aids in easing
the two-fold anxiety: (1) that the cancer will
come back and (2) that you are obsessing
about the cancer coming back.
“I am constantly fighting a battle inside myhead. One side of me constantly worryingthat I will get sick again, the other side
fighting
what
could
becomemyobsession. It helps me so much to hearthat other survivors are feeling the sameway. At least I know this is normal.”- Angie, Survivor

Social Relationships: Having experienced
a life-threatening situation at such an early
age certainly affects the social relationshipsof the survivor and the family. Survivors
struggle with many questions: How do I tellpeople I am a cancer survivor? What arepeople going to think? Why do people notunderstand me? Will anyone want to dateme? Is it okay for me to have sex or be on
birth control pills? Will my parents ever let
go of me enough to let me be a ‘normal’teenager/young adult? These are just a few
of the many questions facing survivors as
they approach different stages andsituations in life. Again, open and frank
discussion of these sensitive topics may
prevent unnecessary hurt and stress.
“I can’t have kids because of mytreatment. When do I tell a girl that? Do
I wait until we are really involved, orshould I tell her upfront? What woman
is going to want to be with a man who
can’t have kids? I am trusting the right
person is out there for me, but it issomething I struggle with daily.”- Jon, Survivor

Self-Esteem/ Self-Confidence Issues:
Depending on the type of treatment theyreceived, survivors may face possible lifelong effects of cancer, such as an
amputation or cognitive damage. If the61Section 5: Issues in Survivorship

impact of these effects is not addressed interms of self-esteem, a person’s ability tofunction in particular situations can beadversely affected. Low self-esteem canalso severely limit a person’s visions andgoals. Discussion and support of thisparticular issue is vital in LTFU clinic visits.
Learning to advocate for oneself generally
increases self-esteem and confidence.
Long-Term Physical Effects of Treatment.
Managing the long-term physical effects oftreatment is an overwhelming, daunting, andcomplicated task for most survivors. Withouta central location, such as a LTFU clinic,
from which to coordinate follow-up, manysurvivors are left without appropriate followup care. Appropriate information must be
given out at each clinic visit to ensure theeducation of the survivor. Ultimately, thesurvivor knows his/her own body best. Still
she/he must be “armed” with evidence topresent to family care practitioners, ER
doctors, or others with whom the survivor
comes in contact.

“I went to student health for something
little. After I rattled off my long medical
history, the doctor was afraid to treat me
and wanted to order several unnecessary
tests. It is very frustrating to know morethan the doctors about yourself and haveto convince people all the time of what you
know is right. Survivors need help
coordinating their care.”- Kara, Survivor

Appropriate information should be given to
survivors regarding late effects of treatment
and appropriate screening. In addition,
LTFU clinic visits should include discussion
and teaching regarding potential cognitivechanges, the developmental implications ofcancer therapy during childhood, how to talkto other healthcare providers about issues
related to childhood cancer survivorship,
and preparation for the transition to the adult
healthcare system.

62

Section 5: Issues in Survivorship

Table 8: Information and Resources for Survivors
About Face
http://www.aboutfaceusa.org
888-486-1209• Oral, Head and Neck
Alliance for Technology Access
http://www.ataccess.org• Technology access resources for children
and adults with disabilities
American Association of Sex Educators,
Counselors & Therapists
http://www.aasect.org
319-895-8407• Fertility & Sexuality
American Brain Tumor Association
http://www.abta.org
800-886-2282• BrainAmerican Cancer Society (ACS)
http://www.cancer.org
800-ACS-2345 (227-2345)• General Resources• Insurance/Financial AssistanceAmerican Chronic Pain Association
http://www.theacpa.org
916-632-0922• Pain Management
American Pain Foundation
http://www.painfoundation.org
888-615-PAIN (7246)• Pain Management
Association of Cancer Online Resources
http://www.acor.org
212-226-5525• Cancer Information• On-line peer support
Blood & Marrow Transplant
Information Network
http://www.bmtnews.org
888-597-7674• Bone Marrow Transplants
The Brain Tumor Society
http://www.tbts.org
800-770-8287• BrainCancer Care, Inc.
http://www.cancercare.org
800-813-HOPE (4673)• General Resources• Patient Support
Cancer Hope Network
http://www.cancerhopenetwork.org
877-HOPENET (467-3638)• Patient Support
Cancer Information Service(National Cancer Institute)
http://www.cancer.gov
800-4-CANCER (422-6897)• General Resources
Cancer Research & Prevention Foundation
http://www.preventcancer.org
800-227-CRFA (227-2732)• Prevention• Research
Candlelighters Childhood Cancer
Foundation
http://www.candlelighters.org
800-366-2223• Pediatric & Young Adult
Childhood Cancer Survivors:
A Practical Guide to Your Future
http://www.oreilly.com/catalog/chsurviv2/• Guidebook to Survivorship Issues
The Children’s Cause
http://www.childrenscause.org
301-562-2765• Pediatric & Young Adult
Coalition of National Cancer
Cooperative Groups
http://www.cancertrialshelp.org
877-520-4457• Clinical Trials
CureSearch
http://www.curesearch.org
800-458-6223• Pediatric & Young Adult• Cancer Information• Research/Clinical Trials• Survivorship Guidelines & Information

63

Section 5: Issues in Survivorship
Table 8: Information and Resources for Survivors (continued)
Employment Discrimination Advocacy
http://www.washlaw.edu/subject/emp.html• Employment Discrimination Resources
Family Caregiver Alliance (FCA)
http://www.caregiver.org
800-445-8106• Caregiving/Family Support
Fertile Hope
http://www.fertilehope.org
888-994-HOPE• Fertility & Sexuality
Genetic Alliance
http://www.geneticalliance.org
202-966-5557• Genetic Discrimination
Gilda’s Club Worldwide
http://www.gildasclub.org
888-GILDA-4-U• Patient Support
Group Loop
http://www.grouploop.org• Teens with Cancer
Healthcare Transitions
http://hctransitions.ichp.ufl.edu/resources.html• Transition Resources

Let’s Face It
http://www.faceit.org
360-676-7325• Oral, Head and Neck
The Leukemia & Lymphoma Society
http://leukemia-lymphoma.org
800-955-4572• Leukemia & Lymphoma
Lymphoma Research Foundation (LRF)
http://www.lymphoma.org
800-500-9976• Lymphoma
National Bone Marrow Transplant Link
http://www.nbmtlink.org
800-LINK-BMT (546-5268)• Bone Marrow Transplants
National Brain Tumor Foundation
http://www.braintumor.org
800-934-CURE (2873)• BrainNational Cancer Institute (NCI)
http://www.cancer.gov
800-4-CANCER (422-6897)• Research & Information• Clinical Trials

http://mchnetlinkplus.ichp.edu/training_materials.html• Transition Training Materials
Health Links
http://www.survivorshipguidelines.org• Individual Survivorship Topics
i[2]y
http://imtooyoungforthis.org• Young Adults with Cancer• Blogs
Intercultural Cancer Council (ICC)
http://www.icc.bcm.tmc.edu
713-798-4617• Minority/Special Population
Kidney Cancer Association
http://www.kidneycancerassociation.org
800-850-9132• Kidney cancer
Lance Armstrong Foundation
http://www.laf.org
512-236-8820• Education and Research

National Children’s Cancer Society
http://www.beyondthecure.org
314-241-1600• Support of local late effects programs• Educational programs for families
National Coalition for Cancer Survivorship
http://www.canceradvocacy.org
877-NCCS-YES (622-7937)• General & Online Resources• Programs & Publications
Planet Cancer
http://www.planetcancer.org• Young Adults with Cancer• On & Off Treatment Issues
Special Education Advocacy
http://www.wrightslaw.com• Special Education Laws
• Advocacy for Children with Disabilities

64Section 5: Issues in Survivorship

EDUCATIONAL ISSUES
ancer treatment and late-effects canhave a negative impact on the survivor's
education.39 Treatment may have caused
the child to miss an inordinate amount ofschool, resulting in difficulty returning toschool, missed assignments and tests, andmissed opportunities to grasp facts andconcepts. When patients return to school,
treatment-related fatigue, frequent absences
for scheduled treatments or for unscheduled
treatment-related
complications,anddifficulties with fine and gross motor skills
resulting from cancer treatment all set themapart physically and socially from theirclassmates. Many survivors fall behind theirpeers academically.
Educational Assessment and Planning
One of the most serious effects related totreatment involving the central nervous
system in childhood cancer survivors is
cognitive impairment. Learning difficulties,
social difficulties, behavioral adjustment
problems, and long-term educational andvocational difficulties may occur.5 The signsof possible learning difficulties may include
problems with:
 Handwriting Spelling Reading and comprehension
 Understanding math facts andconcepts
 Difficulty in sequencing
 Auditory or visual processing Attention deficits
 Short-term memory and information
retrieval Planning and organizational skills
 Social maturity and social skills
Neuropsychological testing is done routinely
for children with certain cancers, such as
brain tumors, or for children requiring cranialradiation or intrathecal chemotherapy.
However, all patients should be monitored
for difficulties such as those outlined above,

and offered psychological testing to target
any learning disabilities.
Neuropsychological assessment of thepatient may begin with a referral from theoncology department to the pediatric
psychologist, or through a referral from thesurvivor's school psychologist. Based on
the results of these tests, the survivor may
be eligible for supportive educational
programs such as tutoring, remedial classesforcertaindifficultsubjects,
andIndividualized Educational and/or Transition
Plans (IEPs/ITPs) that are tailored to meetthe survivor's specific academic needs.
Educational Interventions
Examples of classroom strategies that may
be helpful for survivors with educational
problems related to their treatments include: Preferential seating in classroom
 Minimizing the amount of written workrequired Use of tape-recorders
 Use of computer keyboards instead ofhandwriting Use of calculators for math Modification of test requirements (extra
time, oral instead of written exams)
 Extra help with math, spelling, reading,and organizational skills
 Assignment of a classroom aide
Parents may wish to enlist the help of a
private tutor or consider home-schooling if
they feel their child’s needs are not being
adequately met; however, this may not befinancially feasible for many families.
“The school worked with us to help Johnin school, especially in reading and math,but they admitted they didn’t have the staff
or resources to make an impact on his
special learning needs. We finally decided
to home-school him so that we could
focus on his problem areas.”- Sharon
Mother of 7-year-old ALL patient

65Section 5: Issues in Survivorship

Legal Issues
Some of the laws in the United States that
protect the rights of students with learning
disabilities related to cancer treatment
include:Rehabilitation Act of 1973 – Section 504
This legislation mandates that every publicschool and every educational institution in
the United States receiving federal funding(including colleges and universities) must
provide accommodations for students with aphysical or mental impairment which
substantially limits one or more major life
activities. Cancer is one of the qualifying
conditions for services. Additional conditions
include hearing problems, vision problems,
learning disabilities, speech disorders, andorthopedic limitations. Detailed information
regarding Section 504 is available at
http://www.hhs.gov/ocr/504.html.
The Individuals with Disabilities
Education Act of 2004 (IDEA 2004)
The major provisions of this law insure afree and appropriate education in the least
restrictive environment to all students with aphysical or mental impairment which
substantially limits one or more life activities.
A student with the qualifying condition ofcancer is eligible for the following services
free of charge:
 Special education programs

Speech therapy
Occupational and physical therapy
Psychiatric services
Alternative communication techniques
and technology, such as oral tests or
the use of a computer for taking notes And other interventions or exemptions
from rules and policies as needed tohelp the child learn

Under this act, a student can qualify forspecial education services by initiating an
Individualized Education Plan, or IEP,
through their school.
Once an IEP isrequested, the child will be evaluated andtested by a school psychologist to determine
if services are required. Following thisassessment, teachers and parents meet to
discuss the testing results and develop thestudent’s individualized plan. If parents
disagree with the IEP, feel that the IEP is
inadequate, or that it is not being followed
correctly, they can withdraw consent andask that a new IEP be drafted, or request areview by an independent hearing officer.
Additional information about the IDEA law isavailable at http://idea.ed.gov and from the
National Information Center for Children andYouth with Disabilities (phone: 1-800-6950285; website www.nichcy.org).
Americans with Disabilities Act of 1990
The ADA law protects against discriminationof disabled people with regard to
employment, transportation, communication,
and access to public facilities, spaces,
events and opportunities. It is important forsurvivors with disabilities, or their caregivers,
to have adequate knowledge of this act as it
pertains to school, higher education(Student Disability Services), and potential
employment. This information is availableat www.ada.gov.
Special Education Advocacy
The field of special education is complex,
and navigating the educational system canbe challenging. A wealth of information andassistance with special education issues isavailable at advocacy-oriented websites
such as www.wrightslaw.com.

66Section 5: Issues in Survivorship

EMPLOYMENT ISSUES
ancer affects a person on a physical,
emotional, and psychological level. In somesurvivors, the effects of treatment areminimal, but in others, the effects can bedisabling. As a childhood cancer survivor
enters the period in their life whenemployment becomes a practical matter, thetype of job or career they choose may be
influenced by physical, emotional, andpsychological response to treatment.40
Perhaps the survivor has a physicaldisability that makes it difficult to work in a
job that is physically taxing, involving
activities such as lifting, walking, balancing,or seeing clearly. Perhaps a survivor has
had to deal with emotional issues that might
preclude employment that involve activities
such as meeting new people, being in a
crowd, or being self-motivated, or that may
arouse feelings of stress, depression, oranger. A survivor may have psychologicalor cognitive issues as a result of treatmentthat would make it difficult to work withnumbers and letters, organize ideas, orremember details and recall them later. For
some survivors, these issues will not affecttheir career choices, but for those who livewith significant late effects from cancer
treatment which have an impact on career
options, support services are available.
Vocational/Career Choice Considerations
Vocational education prepares learners forcareers that are traditionally non-academic,
based on manual or practical activities, anddirectly related to a specific trade,occupation,or
vocation.
Vocational
education is sometimes also referred to as"technical education," because the learnerdevelops expertise in a particular group oftechniques or technology. Vocational
education generally focuses on specifictrades such as an automobile mechanic,
welder, plumber, electrician, or nurses' aide.

At the post-secondary level, vocational
education is typically provided by an instituteof technology or by a local community
college.
School-to-work transition refers to on-thejob training, apprenticeships, cooperativeeducation agreements or other programs
designed to prepare students to enter thejob market. These programs expose middle
and high school students to potential future
careers.
Rehabilitation services programs assist
individuals with disabilities to achieve
employment and self-sufficiency. Training
programs may include: Automotive technology
 Business support services
 Millwork
 Culinary arts
 Custodial
 Grounds maintenance/landscaping
 Machine technology
 Nurse assistant RetailSupport services offered often include: Career assessment/planning Reading and math remediation
 High school completion
 Nursing and psychiatric services Occupational therapy Accommodation services
 Job placement servicesIn
the
UnitedStates,qualification
requirementsforrehabilitation
andvocational training vary by state. For further
information, contact the Department of
Education or Office of Vocational and Adult
Education in your state, or visit www.ed.gov.
Legal Issues Related to Employment
While medical care is essential for childhood
cancer survivors, it is just as important forthem to return to their “normal” life as soon
as possible, especially with regard to67Section 5: Issues in Survivorship

employment or searching for employment.
Unfortunately,
cancersurvivorsaresometimes
treatedunfairlyduetopreconceived ideas about cancer that may
lead employers to make inaccurate
assumptions about a cancer survivor's
ability to work. It is important for employers
to understand issues facing workers with ahistory of cancer. In order to counteract thepossibility of workplace discrimination,
survivors
must
promoteanewunderstanding of their ability to contribute to
the workforce.
The key to this newunderstandingiseducationandcommunication with potential employers.
Employment discrimination laws. In the
United States, the Americans with
Disabilities Act (ADA) and Federal
Rehabilitation Act prohibit certain types ofjob discrimination by employers against
people who have had cancer. Under federal
law and in many state laws, an employer
with 15 or more employees cannot treat
cancer survivors differently from otherworkers because of a cancer history, as longas the survivor is qualified for the job inquestion.
A prospective employer may not ask about
health history during an interview unlessthere is a visible disability that the employer
believes may affect the potential employee's
ability to perform the job. This law also
requires an employer to provide “reasonableaccommodations” for employees during or
following cancer treatments.
This mayinclude time off or changes in work hours.
However, an employer does not have to
make changes that would cause thecompany an “undue hardship.”For
example, if an employee had to take timeaway from work that would prove costly or
disruptive to the operation of the business,the employer may replace the employee. It
is therefore always important for theemployee to speak with a supervisor to

discuss alternatives to missed work days or
potential solutions to any problems theemployee may be having in performing
assigned job duties.
Family Medical Leave Act. The Family
Medical Leave Act (FMLA) requires
employers with 50 or more employees toprovide up to 12 weeks of unpaid, jobprotected leave for family members whoneed time off due to their own illness or tocare for a seriously ill family member. The
employee must have been employed for one
year and must have worked for at least 25
hours per week. Some provisions under theact are: Provides 12 weeks of unpaid leave
during any 12 month period Requires employers to continue toprovide health insurance benefits during
the leave period Requires
employers
torestoreemployees to the same or an equivalent
position at the end of the leave period
 Allows intermittent or reduced work
schedule when medically necessary Requires employees to make reasonable
efforts to schedule foreseeable medicalcare so as not to disrupt the workplace
undulyFederal Equal Employment Opportunity(EEO) Laws. Federal laws in the UnitedStates prohibiting job discrimination are:Equal Pay Act of 1963 (EPA):
Protects men and women who perform
substantially equal work in the same
establishment
fromsex-based
wage
discrimination
Civil Rights Act of 1964 (Title VII):
Prohibits employment discrimination basedon race, color, religion, sex, or national
origin68

Section 5: Issues in Survivorship

Age Discrimination in Employment Act of1967 (ADEA): Protects individuals who are
40 years of age or older

Civil Rights Act of 1991:

Rehabilitation Act of 1973, Sections 501
and 505: Prohibits discrimination against
qualified individuals with disabilities who
work in the federal government

The U.S. Equal Employment Opportunity
Commission (EEOC) enforces all of theselaws. EEOC also provides oversight andcoordination of all federal equal employment
opportunity regulations, practices, andpolicies. Additional information regarding
employment discrimination, including links to
websites, resources and listservs isavailable on the Washburn Law website at
http://www.washlaw.edu/subject/emp.html.

Americans with Disabilities Act (ADA) of
1990, Titles I and V: Prohibits employment
discrimination against qualified individuals
with disabilities in the private sector, and instate and local governments

Provides monetary damages in cases ofintentional employment discrimination

69

Section 5: Issues in Survivorship

INSURANCE ISSUES
ealth insurance coverage is an
important issue for everyone, but it isparticularly important for cancer survivors
due to their unique needs for follow-up carerelated to their treatment.40 There are many
types of policies available to the public,
although not all offer the same coverage.
Obtaining Insurance
Private insurance. Most people who obtain
insurance through their employer have what
is called private comprehensive healthcoverage. This type of coverage generally
pays for all basic healthcare needs, such as
hospital and physician care, tests, medical
equipment, supplies, and prescription drug
coverage. The most common types ofprivate insurance plans are the indemnity or"fee-for-service" plan, the managed care or"HMO" plan, the preferred provider
organization or "PPO" plan and the point-ofservice or "POS" plan.
The defining
differences in these policies are the amountof money the individual is required to pay inthe form of premiums, deductibles and copayments, and the choice of medical
providers and hospitals to which the patient
has access.
Public insurance coverage.
Instead ofprivate insurance, some people are eligibleforhealthinsurance
throughthegovernment. Qualifications are based onage, income, health status and/or disability.
Medicare and Medicaid are the largest
public programs in the United States and areavailable in every state.
Medicare.
Medicare is provided by theUnited States government. Survivors may
qualify for Medicare for a variety of reasons,such as disability (regardless of age) orcollection of Social Security benefits for 2
years. Further information is available atwww.medicare.gov/MedicareEligibility.

Medicaid. Medicaid is also a United States
government program that provides healthinsurance to those with limited incomes.
Additional qualification requirements for
Medicaid vary by state and may include age,disability, pregnancy, or having a dependent
child. Some types of cancer and/or cancer
treatment are considered disabilities.
Additional information regarding Medicaid
eligibility
criteria
isavailable
atwww.cms.hhs.gov/MedicaidEligibility .
StateChildren’s
HealthInsurance
Program (S-CHIP). Health insurance forlow-income, uninsured children under theages of 19 or 21 (depending on the state) isavailable through the State Children's Health
Insurance Program (S-CHIP). Generally,
this is a form of public insurance associatedwith the Medicaid program in each state.
Further
informationisavailable
atwww.cms.hhs.gov/schip.
Preventing loss of insurance coverage. If
survivors find themselves in a situation
where they are about to lose their healthinsurance coverage (either private or public),
it is imperative for them to obtain alternate
insurance prior to the end of their current
policy coverage. It can often be very difficult
to obtain insurance after a lapse in policies.
Medical Social Workers or Patient Billing
Representatives are often helpful inproviding assistance for survivors in thissituation.
Supplemental Security Income (SSI). The
Supplemental Security
Income (SSI)
program provides coverage (such as
insurance and financial assistance) toindividuals with disabilities who qualify forfederal disability benefits in the UnitedStates.41
Eligible children must haveevidence of severe functional limitations

70Section 5: Issues in Survivorship

related to a condition that is expected to lastat least 12 months.
Cancer and its
treatment are often qualifying events for thisprogram. A Medical Social Worker canoften assist survivors in accessing SSI
information.
Additional information isavailable through the Social Security
Administration (www.ssa.gov/d&s1).
Legal Issues
Barriers to obtaining insurance coverage.
It is not uncommon for cancer survivors toencounter barriers to obtaining healthinsurance coverage, including refusal of new
applications, policy cancellation or reduction,higher premiums, excluded pre-existing
conditions, and extended waiting periods.36
Among survivors of childhood cancer,
problems obtaining health insurance may becompounded because most survivors havebeen insured under family-related policies
prior to their cancer diagnosis.40
Adolescents and young adults may beespecially vulnerable to insurance problems
as they “age out” of coverage from theirparents' policies or from public insurance,
because they may also encounter othercommon barriers facing young adults, suchas not having an employer that offers healthinsurance benefits, and the prohibitive costs
of individual private insurance. For thosesurvivors who do obtain or retain insurance,
there may be difficulties in obtaining
reimbursement for costs associated withscreening intended to prevent or reduce theimpact of cancer-related late effects,
because these tests are often not included
as benefits offered by health insurance
plans.
Insurance-related laws: In the UnitedStates, three federal laws provide some
protection for survivors related to healthinsurance obtained from employment: Americans with Disabilities Act(ADA 42 U.S.C. 12101 et seq.): Prohibits
employers from denying health insurance
to cancer survivors if other employeeswith similar jobs receive insurance Health Insurance Portability andAccountability Act (HIPAA):
Helps cancer survivors retain their healthinsurance by:- Allowing individuals who have been
insured for the previous 12 months tochange jobs without losing coverage- Preventing group health plans fromdenying coverage based on past or
current health status- Ensuring portability of insurance forthose changing from group to individual
insurance coverage- Requiring that health plans renew
coverage for groups and individuals inmost cases The Consolidated Omnibus Budget
Reconciliation Act (COBRA PL 99272):
Requires employers to offer group
medical coverage to employees and theirdependents who otherwise would havelost their group coverage due toindividual circumstances.
This lawapplies to public and private employers
with 20 or more employees. By allowing
survivors to keep group insurance for alimited time, COBRA allows time for thesurvivor to search for and obtain
alternative long-term coverage.
Cancer survivors who are having trouble
getting insurance authorization for follow-up
care may need the LTFU clinic staff toprovide letters justifying the rationale forthese services. Survivors who are having
difficulty obtaining or maintaining insurance
coverage should contact the Medical Social
Work Department at their institution forassistance.

71References

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Rosoff PM. The two-edged sword of curing childhood cancer. N Engl J Med. Oct 12
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Bhatia S, Meadows AT. Long-term follow-up of childhood cancer survivors: future
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Eiser C, Absolom K, Greenfield D, et al. Follow-up after childhood cancer: evaluation of athree-level model. Eur J Cancer. Dec 2006;42(18):3186-3190.
Friedman DL, Freyer DR, Levitt GA. Models of care for survivors of childhood cancer.
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Aziz NM, Rowland JH. Trends and advances in cancer survivorship research: challenge
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Landier W, Wallace WH, Hudson MM. Long-term follow-up of pediatric cancer survivors:
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Zebrack BJ, Eshelman DA, Hudson MM, et al. Health care for childhood cancer
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Hudson MM, Hester A, Sweeney T, et al. A model of care for childhood cancer survivors
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73

Appendix 1: COG Resources

APPENDIX 1:
COG Resources Sample Section from
COG Long-Term Follow-Up Guidelines Sample COG Health Link
 COG Treatment Summary Templates:- Abbreviated- Comprehensive
 Late Effects Web Forum Late Effects Directory of Services

All items in Appendix 1 are copyrighted by the Children's Oncology Group © 2007, used with permission

74Appendix 1: COG Resources

RESOURCES AVAILABLE FROM COG
Long-Term Follow-Up Guidelines

Summary Form Templates

The Children's Oncology Group's LongTerm Follow-Up Guidelines for Survivors ofChildhood, Adolescent, and Young Adult
Cancers, with instructions for use, areavailable at www.survivorshipguidelines.org(click on "Long-Term Follow-Up Guidelines")[see Figure 2].

Templates and instructions for creating
Cancer Treatment Summary Forms (inabbreviated and comprehensive formats)are available by clicking on "Appendix I" at

The LTFU Guidelines and accompanying
materials are updated periodically by the
COG Late Effects Task Forces; therefore, itis advisable to check the website
periodically for updates.

www.survivorshipguidelines.org [see Figure 2].

Health Links
Patient education materials, known as"Health Links," expand upon topics from theLong-Term Follow-Up Guidelines in lay
language format. All 42 “Health Links” areavailable by clicking on "Appendix 2" atwww.survivorshipguidelines.org [see Figure 2].

Figure 2: COG Long-Term Follow-Up Guidelines Website
www.survivorshipguidelines.org

75Appendix 1: COG Resources

Figure 3: Sample page from COG Long-Term Follow-Up Guidelines(Entire set of COG LTFU Guidelines is available at www.survivorshipguidelines.org)

76

Appendix 1: COG Resources

Figure 4: Sample page from COG Health Link
(Entire set of Health Links is available at www.survivorshipguidelines.org)

77

Appendix 1: COG Resources

Figure 5: Abbreviated treatment summary(Summary form and instructions are available at www.survivorshipguidelines.org)

78

Appendix 1: COG Resources

Figure 6: Comprehensive treatment summary (page 1)(Summary form, instructions, and key for completion are available at www.survivorshipguidelines.org)

79

Appendix 1: COG Resources

Figure 6: Comprehensive treatment summary (page 2)(Summary form, instructions, and key for completion available at www.survivorshipguidelines.org)

80Appendix 1: COG Resources

Late Effects Web ForumThe Late Effects Web Forum is an on-line
discussion board where COG members canpost and reply to questions regarding issues
relating to late effects and long-term followup.
Questions and replies remain
accessible from the website as a resource
for those seeking similar information. To
reach the Late Effects Web Forum from the

COG member home page, click on"Committees", then "Discipline", then"Nursing", and then click on "Late Effects
Web Forum" from the menu on the left sideof the page.
Detailed instructions areprovided below. Current COG membershipand a valid web-access password are
required for participation in the Late Effects
Web Forum.

Figure 7: Late Effects Web Forum Instructions

81

Appendix 1: COG Resources

Figure 7: Late Effects Web Forum Instructions (continued)

82

Appendix 1: COG Resources

Figure 7: Late Effects Web Forum Instructions (continued)

83Appendix 1: COG Resources

Figure 7: Late Effects Web Forum Instructions (continued)

84

Appendix 1: COG Resources

Figure 7: Late Effects Web Forum Instructions (continued)

85

Appendix 1: COG Resources

Figure 7: Late Effects Web Forum Instructions (continued)

86Appendix 1: COG Resources

Figure 7: Late Effects Web Forum Instructions (continued)

87Appendix 1: COG Resources

Late Effects Directory of Services
The Late Effects Directory of Services is an
on-line database of LTFU programs at COG
member institutions, created by Debra
Eshelman, RN, MSN, CPNP, and Karen
Kinahan, RN, MS, APRN.
Available
information includes types of patients
followed, service providers, names andcontact information for clinic coordinators
and appointment scheduling.

The Directory of Services is available to the
public from the COG public website atwww.childrensoncologygroup.org (click on"Late Effects Directory of Services") [seeFigure 8]. More detailed information fromthe database is accessible to COG
Members from the member website byclicking on "Applications" and then "Late
Effects Directory of Services" (listed underthe "Miscellaneous" category). Instructions
are provided in Figure 9.

Figure 8: Late Effects Directory of Services on Public Website www.childrensoncologygroup.org

88Appendix 1: COG Resources

Figure 9: Instructions for Late Effects Directory of Services on COG Member Website

89Appendix 1: COG Resources

Figure 9: Instructions for Late Effects Directory of Services on COG Member Website

90Appendix 1: COG Resources

Figure 9: Instructions for Late Effects Directory of Services on COG Member Website

91

Appendix 1: COG Resources

Figure 9: Instructions for Late Effects Directory of Services on COG Member Website

92

Appendix 1: COG Resources

Figure 9: Instructions for Late Effects Directory of Services on COG Member Website

93Appendix 2: IOM Recommendations

APPENDIX 2:
Institute of Medicine Recommendations
With commentary by John Gates, MDChildren's Hospital Central California
Madera, California

94Appendix 2: IOM Recommendations

RECOMMENDATIONS FROM
THE INSTITUTE OF MEDICINEWITH COMMENTARY
The task of educating and providing services for childhood cancer survivors prompted theInstitute of Medicine (IOM) to issue a report5 detailing steps for improving care and quality of life
for survivors of childhood cancer. Listed below are the IOM recommendations, along withcomments regarding progress that has been made since the report’s release in 2003, as well as
ongoing challenges in survivorship care.
RECOMMENDATION 1: Develop evidence-based clinical practice guidelines for the care ofsurvivors of childhood cancer.
Commentary: The Children’s Oncology Group (COG) established a task force to accomplish thisgoal, and as a result has developed a set of evidence-based LTFU guidelines known as theChildren’s Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood,
Adolescent, and Young Adult Cancers, available at www.survivorshipguidelines.org. These
guidelines identify health risks related to specific therapeutic exposures used during treatment ofchildhood cancer and provide recommendations for screening and management of late effects inchildhood cancer survivors.
In addition to having a plan for medical follow-up, it is also important to design a healthcare
system responsive to the full range of survivors’ healthcare needs. The IOM report recommends
development of comprehensive multidisciplinary follow-up programs for childhood cancer
survivors that include the following:

Psychological services to address psychological implications of cancer for survivors andtheir families



Educational support through school transition programs

Personnel to assist with insurance and employment issues

A transition plan to facilitate the transfer of survivors into adult systems of care as theyreach young adulthood

Although many COG institutions provide medical follow-up care for childhood cancer survivors,
not all institutions currently provide multidisciplinary programs addressing this full range ofsurvivor care.
RECOMMENDATION 2: Define a minimum set of standards for systems of comprehensive,
multidisciplinary follow-up care that link specialty and primary care providers (PCPs),ensure the presence of such a system within institutions treating children with cancer, andevaluate alternate models of delivery of survivorship care.
Commentary: Providing a network of specialty and primary care providers to manage themultiple aspects of care required by childhood cancer survivors is often complicated by multiple
factors, including time, distance, and insurance-related issues. A survivor may need coordinationof care involving multiple specialists, such as a cardiologist, neurologist, endocrinologist, surgeon,
ophthalmologist, physical therapist, neuropsychologist and oncologist, as well as continue torequire vaccines, check-ups, dental care, specialized educational services and/or vocationalcounseling and community support. Obtaining access to any one of these requires time, financial

95Appendix 2: IOM Recommendations

resources, effort, the correct referrals, and persistence. Survivors may require many or all ofthese services, and often face the challenge of navigating complex healthcare systems withvariable results.
RECOMMENDATION 3: Improve awareness of late effects and their implications for longterm health among childhood cancer survivors and their families.
Commentary: Inadequate knowledge regarding diagnosis and treatment among childhood
cancer survivors has been documented, and many survivors are also unaware of their risk for lateeffects. Although wellness education and care summaries are provided through many LTFU
programs, a recent report from the Childhood Cancer Survivor Study revealed that the likelihoodof a survivor undergoing a general physical exam or cancer-related visit within a two-year period
decreased substantially as the survivor aged or as the time interval from diagnosis increased, andthat only a minority of adult survivors of childhood cancer received risk-based healthcare(Oeffinger et al., 2004). Many survivor programs use multidisciplinary teams to provide education
and resources regarding late effects - including psychosocial and wellness issues - using an arrayof formats (e.g., booklets, handouts, workshops).
However, these programs are often
geographically distant from survivors and may not serve patients who are beyond the pediatricage range.
RECOMMENDATION 4: Improve professional education and training regarding late effects
and their management for both specialty and PCPs.
Commentary: Many times the PCP is the one responsible for ongoing health management ofchildhood cancer survivors. PCPs may lack adequate information and resources in order to: 1)
verify health risk factors of survivors; 2) stay up-to-date with research and developments in thearea of late effects; 3) become familiar with the support and educational resources available; and4) effectively provide quality long-term survivor services. Emphasis on survivorship issues in the
curricula of both primary and specialty training programs will help with this process, but ongoingeducation to physicians and multidisciplinary specialty providers who may encounter childhood
cancer survivors in their practices is also essential.
RECOMMENDATION 5: The Health Resources and Services Administration’s Maternal andChild Health Bureau and its partners should be fully supported in implementing the“Healthy People 2010” goals for children with special healthcare needs. These efforts
include a national communication strategy, efforts at capacity building, setting standards,
and establishing accountability.
Commentary: Although many childhood cancer survivors attain a high quality of life following
completion of treatment, a significant number are faced with late effects and medical problems
similar to individuals with other chronic illnesses and disabling conditions. Strengthening public
programs serving children and adults with special needs and ensuring childhood cancer survivors
have appropriate access to services is a priority.

96Appendix 2: IOM Recommendations

RECOMMENDATION 6: Federal, state, and private efforts are needed to optimize childhood
cancer survivors’ access to appropriate resources and delivery systems through both
health insurance reforms and support of safety net programs such as Health Resources
and Services Administration’s community and migrant health centers.
Commentary: Ideally everyone, regardless of medical history or employment status, should have
health insurance coverage and access to affordable healthcare. In lieu of national healthcare
reform in the United States, support for childhood cancer survivors may be provided by statelegislation targeting their specific issues. Such changes may allow survivors access to affordable
healthcare services and prevent them from being excluded from receiving healthcare when theyneed it most.
RECOMMENDATION 7: Public and private research organizations (e.g., the National
Cancer Institute, the National Institute for Nursing Research, the American Cancer Society)must increase support for research to prevent or ameliorate the long-term consequencesof childhood cancer. Priority areas of research include assessing the prevalence andetiology of late effects; testing methods that may reduce late effects during treatment;
developing interventions to prevent or reduce late effects after treatment; and furthering
improvements in quality of care to ameliorate the consequences of late effects on
individuals and families.
Commentary: Understanding and preventing or adequately treating the complications associatedwith surviving childhood cancer will allow this population to achieve the best health statuspossible. Only when this is achieved can we truly say that we have conquered childhood cancer.

97Appendix 3: Sample Forms and Letters

APPENDIX 3:
Sample Forms and Lettersfor use in Long-Term Follow-Up Clinics

98Appendix 3: Sample Forms and Letters

APPENDIX 3
PROCEDURES
PREPARATION FOR CLINIC (UCSF)
CLINICAL FORMS
CLINICAL SUMMARY FORM (CAROLINAS MEDICAL CENTER)
CLINICAL SUMMARY FORM (NORTHWESTERN UNIVERSITY)
COMBINED CLINICAL SUMMARY/H&P [INITIAL/NON-TRANSPLANT] (UNIV OF MICHIGAN)
COMBINED CLINICAL SUMMARY/H&P [INITIAL/TRANSPLANT] (UNIV OF MICHIGAN)
COMBINED H&P/PATIENT EDUCATION FORM [SUBSEQUENT] (UNIV OF MICHIGAN)
COMBINED CLINICAL SUMMARY/OFF-THERAPY EVAL FORM (CHOP)
H & P FORM (CITY OF HOPE)
H & P FORM - TRANSPLANT (HELEN DEVOS CHILDREN’S HOSPITAL)PSYCHOSOCIAL ASSESSMENT FORM – SOCIAL WORK (UNIV OF MICHIGAN)
NUTRITION ASSESSMENT FORM (UNIV OF MICHIGAN)
PSYCHOLOGY ASSESSMENT FORM (CITY OF HOPE)
PATIENT EDUCATION/HEALTH LINKS FORM (CAROLINAS MEDICAL CENTER)QUESTIONNAIRESBASELINE QUESTIONNAIRE, ENGLISH/SPANISH (COOK CHILDREN’S HOSP)COMBINED ANNUAL QUEST/H&P/EDUCATION/FAMILY HX FORM (ST. JUDE)ANNUAL QUESTIONNAIRE (UCSF)
ANNUAL QUESTIONNAIRE: CHILD/TEEN, ENGLISH/SPANISH (CITY OF HOPE)
ANNUAL QUESTIONNAIRE: ADULT, ENGLISH/SPANISH (CITY OF HOPE)
LETTERSAPPOINTMENT LETTER (HELEN DEVOS CHILDREN’S HOSPITAL)APPOINTMENT LETTER (COOK CHILDREN’S HOSPITAL)APPT REMINDER LETTER, ENGLISH/SPANISH (COOK CHILDREN’S HOSPITAL)AUTHORIZATION LETTERS, STATE FUNDED PROGRAM (MILLER CHILDREN’S)
POST-CLINIC LETTER TO PATIENT (CAROLINAS MEDICAL CENTER)
POST-CLINIC LETTER TO PHYSICIAN (UNIV OF MICHIGAN)
POST-CLINIC LETTER TO PHYSICIAN (UCSF)

Appendix 3: Sample Forms and Letters

PROCEDURES
PROCEDURE:
PREPARATION FOR CLINIC
UCSF
San Francisco, CA

Appendix 3: Sample Forms and Letters

UCSF Survivors of Childhood Cancer Program
Preparing for Long-Term Follow-Up Clinic
Pre-Clinic1.) Gather patient data, via an extensive medical record review
a. Gather data from medical records, FoxPro and STOR records (if seen at UCSF)
i. Demographic Data (Name, Gender, Date of Birth, Contact Info)ii. Diagnosis
1. Include site, stage, date, relapses, metastases, etc.
iii. Protocol(s) treated on
1. Start/End Dates, Note if treated on or off study
iv. Chemotherapies (Agents, doses, cumulative doses)
1. Critical information by agent:a. Methotrexate and Cytarabinei. High dose = any single dose > 1000 mg/m2
b. Carboplatin
i. Myeloablative Dose = conditioning dose for HCT (BMT)c. Daunorubicin, Doxorubicin, Epirubicin, Idarubicin, Mitoxantrone
i. Note age at first dose
ii. Cumulative Dosages criticalv. Radiation Therapy Summary
1. Type of radiation therapy (external beam, IMRT, etc), Fields involved,
start/stop dates, # of fractions, dose per fraction, total dose in cGy
2. Note age at time of XRT for the following fields of radiationa. Thoracic Spine, Mantle, Mediastinal, Chest/Thorax, Axilla, Whole Abdomen,
or any Abdomen fieldvi. HCT Data (Bone Marrow Transplant/Hematopoetic Cell Transplant)
1. Type of transplant, source of cells, cell donor, conditioning regimen, GVHD
prophylaxis and treatment

2. These records are not always included in the general medical record, but areavailable from the UCSF BMT Department (if treated at UCSF).

3. Take note if patient experienced chronic GVHD.
vii. Surgical Procedure Summary
1. Type of surgery, date, site, surgeon
viii. Other therapeutic modalities
1. MIBG, I-131, Bioimmunotherapy (G/GM-CSF, etc.)
ix. Significant complications during/after treatment
1. Any significant interval history since treatment
2. Past medical problems
3. Adverse drug reactions/allergies
b. Enter all gathered data into database2.) Print Pre-Appointment Forma. This summarizes the treatment information for the patient.
3.) Find patient-specific guidelines
a. Using the “Patient-Specific Guideline Identification Tool”, check off and fill in
information appropriate to patients.
i. Find the applicable guideline sections in the Long Term Follow-Up Guidelines
ii. Fill in appropriate Baseline Examinations and Recommended Follow-Up
Examinations in the database

Procedure: Preparation for Clinic
University of California San Francisco

Page 1 of 3

Appendix 3: Sample Forms and Letters4.) Make Dictationa. Output a dictation template from the databaseb. Open the Dictation Template file in the “Clinic Preparation Templates” folder.
i. Save template for the current patient in the “Patient Information” folder, under“Dictations”
1. Name the file with the patient’s name (Last, First, Medical Record #)ii. Customize template for the patient’s information
1. Fill in patient’s name where necessary, and customize paragraphs to match
patient data (change his/her to gender-specific identifier)
2. Paste in Cancer information, Protocol, Chemotherapy, Surgery, Radiation, Past
Medical Problems, Baseline Examinations, and Recommended Follow-Up
from database-outputted document.
3. Customize the “Assessment and Long-Term Follow-Up Recommendations”
section to the patient, removing non-pertinent sections based on whichdrugs the patient was treated with.
5.) Create a “Patient Follow-Up Letter”, and print HealthLinks
a. Customize for the patient, indicating which baseline examinations need to becompleted.
b. Print out patient-specific HealthLinks from www.survivorshipguidelines.org, whenindicated by the LTFU Guidelines
6.) Create Lab Requisitions
a. Based on patient’s recommended baseline examinations, in accordance to the followup letter, create appropriate lab requisitions.
7.) Assemble Patient Charta. Label chart with patient name and MRN
b. Place all history and roadmaps in the first section, left sidec. Place the “Pre-Appointment Form” in the first section, right side.
d. Place Dictation Template in second section, left side.
e. Place a “patient intake form” and growth chart in second section, right side
f. Print out a copy of the “Patient Questionnaire” and place in the third section, left
side.
g. Print out and place social work packet in third section, right side.
h. Clip all HealthLinks together, placing the “Patient Follow-Up Letter” on top, and lab
requisitions on bottom, and place loose in third section.
During Clinic1.) Greet patient, and introduce questionnaire2.) Following patient’s visit, update database with any new information provided
by the questionnaire.
a. If the patient’s current outside doctor has changed from what is currently listed on
the dictation template, change to reflect patient’s current doctor.
b. Add patient’s address to carbon copy section if patient opted to receive letter.
3.) Ensure that doctor has made or will make a STOR dictation, so that the lettercan be pasted in ASAP.

Procedure: Preparation for Clinic
University of California San Francisco

Page 2 of 3

Appendix 3: Sample Forms and Letters

After Clinic
1.) Assist MDs in completing dictations when appropriate.
2.) E-Mail to Karon once all dictations are complete, indicating that they can besent.
a. If passport requires any corrections:i. Update and re-print passport, and send to patient along with dictation.
3.) Follow up with patients regarding labs, etc.
4.) Return charts to Medical Records
a. Place all medical records ready for return into a box, and put in right side corner ofconference roomb. E-Mail to Jackie indicating which boxes are ready to be returned to Medical Records
i. Assist her if necessary

Procedure: Preparation for Clinic
University of California San Francisco

Page 3 of 3

Appendix 3: Sample Forms and Letters

CLINICAL FORMS
CLINICAL SUMMARY FORM
Carolinas Medical Center
Charlotte, NC

Appendix 3: Sample Forms and Letters

PATIENT SUMMARY FORM
Letterhead

Summary
Disease, Treatment and Follow-up(patient name):
This is your pediatric oncology, long-term follow-up summary, which should be sharedwith your doctor(s) and kept in your personal files.
Medical Record Number:
Diagnosis:
Date of Diagnosis:

Age at Diagnosis:

Summary of presentation:
Treatment Summary:1) Surgery:
2) Chemotherapy:3) Radiation Therapy:4) Complications:Protocol # ________

Date off Treatment:
Potential Problem:

Recommendation:

These are the specific risks and recommendations for your medical follow-up based upon
your disease and treatment.
1)
2)
3)…..
General recommendations for all cancer survivors include:1) yearly physical exams with primary care provider2) yearly dental exams
3) yearly ophthalmology ….
Clinical Forms: Clinical Summary
Carolinas Medical Center

Page 1 of 1

Appendix 3: Sample Forms and Letters

CLINICAL SUMMARY FORM
Northwestern University (STAR Program)
Chicago, IL

Appendix 3: Sample Forms and Letters

Clinical SummarySS#:
Date of Appointment:

Name:
DOB:

Sex:

Race:

NMFF MR#

Diagnosis:
Date of Diagnosis:
Age at Diagnosis:
Date First Referred to

Heme/Onc:

Presenting Symptoms & Findings (PE and/or Labs):

Prognostic Factors: For Leukemia
Age:
WBC:
Risk Group:
Lineage:
CNS Status:
Cytogen/Other:

For Solid Tumors
Stage:
Site(s) of Involvement:
Other:PMH:
FH:

Treatment:

Protocol:Date Initiated:
Date Completed:
Chemotherapy:
Radiation:
Transfusions:

Procedures:
Acute Complications:-1-

Clinical Forms: Clinical Summary
STAR Program (Northwestern)

Page 1 of 6

Appendix 3: Sample Forms and Letters

BMT-Y or N?
If yes,see page 2A

Relapse Y or N?If yes,
See page 2A

Maintenance

Delayed Intensification

Re-Intensification

Consolidation

Induction

Chemotherapy Drugs:

Interim Maintenance

Name:

Primary Therapy*Total Anthracycline Dose: mg/m2
Other:
Radiation:
Date (From – To)

Site

Dose/ScheduleShielding-2-

Clinical Forms: Clinical Summary
STAR Program (Northwestern)

Page 2 of 6

Appendix 3: Sample Forms and Letters

Name:
Cardiac Studies:
Type

Date

Results

Date

Results

Date

Results

Endocrine Studies:Type

Other Studies:Type-3Clinical Forms: Clinical Summary
STAR Program (Northwestern)

Page 3 of 6

Appendix 3: Sample Forms and Letters

Name:
Psychosocial/Neurocognitive:
Marital Status:
Pregnancies:
Viable Offspring:
Employed:
Occupation:
Insurance:
Education – Highest Level:
Special Education:
Past Medical Concerns:

Known Late Effects:( )Growth( )Obesity/FTT( )Immunologic( )a/c GVHD( )ENT( )Ophthal( )Dental( )Cognitive( )Psychological( )Endocrine( )Malig-1st Rel

Dx:
Onset:
Status:( )Cardio-vasc( )Pulmonary( )GI( )Hepatic( )Renal( )Neurologic( )Muscular( )Dermatologic( )2nd Malig( )Malig-2nd Rel( )OrthoDx:
Onset:
Status:Dx:
Onset:
Status:Dx:
Onset:
Status:New Concerns/Plan:

Labs Needed:
LTFU Visit Dates:
Date Form Completed:-4-

Clinical Forms: Clinical Summary
STAR Program (Northwestern)

Page 4 of 6

Appendix 3: Sample Forms and Letters

Name:
ADDENDUM – Recurrence/Progressive Disease
Date:
Presentation:
Significant Findings:

If additional treatment
given, see page 2B

Maintenance

Delayed Intensification

Interim MaintenanceConsolidation

Relapse Chemotherapy:

Induction

Site:

Re-Intensification

TREATMENT

Date off Therapy:
Surgery/Major Procedures (incl. Diagnostic)/Significant Complications:-2A-

Clinical Forms: Clinical Summary
STAR Program (Northwestern)

Page 5 of 6

Appendix 3: Sample Forms and Letters

Name:

-2B-

Clinical Forms: Clinical Summary
STAR Program (Northwestern)

Page 6 of 6

Appendix 3: Sample Forms and Letters

COMBINED CLINICAL SUMMARY AND H&P FORM
INITIAL VISIT / NON-TRANSPLANT PATIENT
University of Michigan
Ann Arbor, MIAppendix 3: Sample Forms and Letters

Long-Term Follow-Up Clinical Summary
Name:

Sex:

CPI #:

Race:

DOB:

Date of Dx:

Allergies:

Age at Dx:

Past medical history: Family history: Cancer in first degree relative:
Cancer in second degree relative:

Yes

No

Yes

No

Presenting symptoms and physical exam:

Diagnosis:
Histology/morphology:
Stage:

Marker Studies:

Metastatic Sites:

Chromosomes: Done?

Initial workup:
CBC:

WBC

Hgb

PLT

ESR

DIFF

Chem:

Creat

Alk Phos

LDH

AST

Ca

CSF:
BM:
Radiologic tests done:

Surgery history:
1.
2.

Treatment:

3.

First Protocol:
Patient ID#
Second Protocol:
Patient ID#

Clinical Forms: Combined Clinical Summary/H&P
University of Michigan (Initial Visit/Non-Transplant)

Page 1 of 4

Appendix 3: Sample Forms and Letters

Cumulative Drug Doses:
Ifosfamide
L’Asparaginase
Methotrexate(IT) Methotrexate
Nitrogen mustard*Other anthracycline
Prednisone
Procarbazine
6-MP
6-TG
Thiotepa
Vinblastine
Vincristine
VM-26

Actinomycin
Adriamycin
Ara-C(IT) Ara-C
Bleomycin
CCNU/BCNU
Carboplatin
Cisplatin
Cyclophosphamide
Daunomycin
Decadron
DTIC
Etoposide
5 FU
Transfusions:
Yes:
No:
Radiation therapy:
Site:

Dose:

Complications:
Neurologic?
Cardiac?
Pulmonary?
Endocrine?
Dental?

GI Tract?
Hepatic?
Renal?
Growth?
EENT?

Infectious (not F&N)?
Bone?
Muscle?
2nd Malignancy?
Skin?

Date off therapy:

Number of hospitalizations off therapy:

Problems off therapy:

Clinical Forms: Combined Clinical Summary/H&P
University of Michigan (Initial Visit/Non-Transplant)

Page 2 of 4

Appendix 3: Sample Forms and Letters

Most recent diagnostic studies:
Echo:

EKG:

PFT’s:HIV Status:

Scans:

Holter:CXR:

HepC Status:

Mammogram:

Semen Analysis:

Audiogram:

Current medications and doses:

Immunization Status:

Current MD’s Name & Address:
Current interval history/concerns:
Physical Exam:

Date:_______________

Ht_____%_____ Wt_____%_____ BMI _____

BP_____

HR_____PRIMARY TUMOR SITE:
HEENT:OPTHOMALOGY:
Cataracts:
Yes

TANNER STAGE:

No

EXAM OF TEETH:

FEMALE:
Menarche: Y N

Age: _____

Regular:_____ Irregular: _____SKIN:

Use of OCP’s: ______

CVS:
RESP:

YES

NO

THYROID:

Tobacco:

_____

_____

BREAST EXAM (F):

Alcohol:

_____

_____

Seat Belt:

_____

_____

Bike Helmet: __________

Sunscreen

_____

ABD:

MSK:

_____

NEURO:

Clinical Forms: Combined Clinical Summary/H&P
University of Michigan (Initial Visit/Non-Transplant)

Page 3 of 4

Appendix 3: Sample Forms and Letters

Psychosocial:
Marital Status:

Special education:

Pregnancies/ Offspring:Highest Level Education:

Insurance Status:

GPA:

Health:Employed/Occupation:

Life:

Psychosocial Functioning:

Problem List:
1.
2.
3.
4.
5.

Recommendations:
1.
2.
3.
4.
5.

Signature:___________________________________ Date: __________________

Clinical Forms: Combined Clinical Summary/H&P
University of Michigan (Initial Visit/Non-Transplant)

Page 4 of 4

Appendix 3: Sample Forms and Letters

COMBINED CLINICAL SUMMARY AND H&P FORM
INITIAL VISIT / TRANSPLANT PATIENT
University of Michigan
Ann Arbor, MIAppendix 3: Sample Forms and Letters

Long-Term Follow-Up Clinical Summary
Name:

Sex:

CPI #:

Race:

DOB:

Date of Dx:

Allergies:

Age at Dx:

Past medical history: Family history: Cancer in first degree relative:
Cancer in second degree relative:

Yes

No

Yes

No

Presenting symptoms and physical exam:
Diagnosis:
Histology/morphology:
Stage:

Marker Studies:

Metastatic Sites:

Chromosomes: Done?

Initial workup:
CBC:

WBC

Hgb

PLT

ESR

DIFF

Chem:

Creat

Alk Phos

LDH

AST

Ca

CSF:
BM:
Radiologic tests done:

Surgery history:
1.
2.
3.

Treatment:
First Protocol:
Patient ID#
Second Protocol:
Patient ID#

Clinical Forms: Combined Clinical Summary/H&P
University of Michigan (Initial Visit/Transplant)

Page 1 of 4

Appendix 3: Sample Forms and Letters

Cumulative Drug Doses:
Actinomycin
Adriamycin
Ara-C(IT) Ara-C
Bleomycin
CCNU/BCNU
Carboplatin
Cisplatin
Cyclophosphamide
Daunomycin
Decadron
DTIC
Etoposide
5 FU

Ifosfamide
L’Asparaginase
Methotrexate(IT) Methotrexate
Nitrogen mustard*Other anthracycline
Prednisone
Procarbazine
6-MP
6-TG
Thiotepa
Vinblastine
Vincristine
VM-26

Transfusions:
Yes:
No:
Radiation therapy:
Site:

Dose:

Complications:
Neurologic?
Cardiac?
Pulmonary?
Endocrine?
Dental?

GI Tract?
Hepatic?
Renal?
Growth?
EENT?

Infectious (not F&N)?
Bone?
Muscle?
2nd Malignancy?
Skin?

Date of transplant:
Date off all immunosuppressants:
Post transplant complications:

Hospitalizations post transplant:

Clinical Forms: Combined Clinical Summary/H&P
University of Michigan (Initial Visit/Transplant)

Page 2 of 4

Appendix 3: Sample Forms and Letters

Most recent diagnostic studies:
Echo:

EKG:

PFT’s:HIV Status:

Scans:

Holter:CXR:

HepC Status:

Mammogram:

Semen Analysis:

Audiogram:

Current medications and doses:

Immunization Status:

Current MD’s Name & Address:
Current interval history/concerns:
Physical Exam:
Ht_____%_____

Date:_______________
Wt_____%_____ BMI _____

BP_____

HR_____PRIMARY TUMOR SITE:
GVHD symptoms:
HEENT:OPTHOMALOGY:
Cataracts:

TANNER STAGE:

Yes

No

EXAM OF TEETH:

FEMALE:
Menarche: Y N

Age: _____

Regular:_____ Irregular: ______SKIN:

Use of OCP’s: ______

CVS:
RESP:

YES

NO

THYROID:

Tobacco:

_____

_____

BREAST EXAM (F):

Alcohol:

_____

_____

Seat Belt:

_____

_____

Bike Helmet: __________

Sunscreen

_____

ABD:

MSK:

_____

NEURO:

Clinical Forms: Combined Clinical Summary/H&P
University of Michigan (Initial Visit/Transplant)

Page 3 of 4

Appendix 3: Sample Forms and Letters

Psychosocial:
Marital Status:

Special education:

Pregnancies/ Offspring:Highest Level Education:

Insurance Status:

GPA:

Health:Employed/Occupation:

Life:

Psychosocial Functioning:

GVHD: antibiotic prophylaxis Y
Annual:1. Opthy exam
2. Dental exam
3. Respiratory function
4. Gonadal function
5. Vaginal exam for females
6. Immunizations
7. DexaScan

N

Problem List:
1.
2.
3.
4.
5.
Recommendations:
1.
2.
3.
4.
5.
Signature:______________________________________ Date: __________________

Clinical Forms: Combined Clinical Summary/H&P
University of Michigan (Initial Visit/Transplant)

Page 4 of 4

Appendix 3: Sample Forms and Letters

COMBINED H&P / PATIENT EDUCATION FORM
SUBSEQUENT VISIT
University of Michigan
Ann Arbor, MIAppendix 3: Sample Forms and Letters

Subsequent Visit - Long-Term Follow-Up Clinic
Name:
CPI#:

Age:
Date:

Past Cancer History:
Problems/Issues from last year’s visit:

Current interval history/concerns:

Current medications and doses:

Immunization Status:

Current MD’s Name & Address:
Physical Exam:
Ht_____%_____

Wt_____%_____

Date:
BMI: ________ BP_____HR_____

Primary Tumor Site:
HEENT:
Cataracts:

TANNER STAGE:
Yes

No

SKIN:

FEMALES
Menarche: ________
Age: ________CVS:

Regular: ______ Irregular______RESP:

Length of cycle:_______Day of cycle: _________
Use of OCP’s: Yes NO

EXAM OF TEETH:

YES

NO

THYROID:
BREAST EXAM (f):Tobacco:

_____

_____

ABD:

Alcohol:

_____

_____

Clinical Forms: Combined H&P/Patient Education
University of Michigan (Subsequent Visit)

Page 1 of 3

Appendix 3: Sample Forms and Letters

MSK:
SCOLIOSIS EXAM: NL____ ABNL_____

Seat Belt:

_____

_____

NEURO:

Bike Helmet: __________

Sunscreen

_____

_____

Most recent diagnostic studies:










Echo:
EKG:
Holter:
PFT’s:
HepC Status:
HIV Status:
CXR:

Mammogram:
Audiogram:Psychosocial:
Marital Status:

Highest Level Education:

Pregnancies/Viable Offspring:

IEP:

Insurance Status:

Special education

Health: Y N

GPA:

Life: Y N

Employed/Occupation:

Psychosocial functioning:

Current Problems/ Issues:
1.

Clinical Forms: Combined H&P/Patient Education
University of Michigan (Subsequent Visit)

Page 2 of 3

Appendix 3: Sample Forms and Letters

Plan:
1.
2.
3.
4.
5.

Signature:__________________________________

Date: _______________

PATIENT EDUCATION MATERIALS



























Introduction to Long-Term Follow Up Care
Childhood Cancer Survivors Book
Avascular necrosis
Bleomycin Alert
Bone Health
Breast Cancer
Central Adrenal Insufficiency
Dental Health
Emotional Issues after Childhood Cancer
Eye Problems
Female Health Issues
Finding Appropriate Healthcare
Growth Hormone Deficiency
Health Promotion through Diet and Exercise
Hearing Problems
Heart and Anthracyclines
Heart and Radiation
Hepatitis
Hyperprolactinemia
Hypopituitarism
Kidney Health
Limb Salvage
Liver HealthMale Health Issues
Peripheral Neuropathy

Clinical Forms: Combined H&P/Patient Education
University of Michigan (Subsequent Visit)

















Precocious Puberty
Pulmonary Health
Raynaud’s Phenomenon
Reducing the Risk of Second Cancers
School and Learning Issues
Scoliosis and Kyphosis
Single Kidney Precautions
Skin Health
Spleen Precautions
Thyroid Problems
Camp materials
Scholarship Material
Osteoporosis Guidelines
Nutritional Resources
 _____________
 ____________
 ______________
 _______________

Page 3 of 3

Appendix 3: Sample Forms and Letters

COMBINED CLINICAL SUMMARY AND
OFF-THERAPY EVALUATION TRACKING FORM
Children’s Hospital of Philadelphia
Philadelphia, PA

Appendix 3: Sample Forms and Letters

Cancer Survivorship Clinic - Clinical Summary
Demographics
Name:
DOB:
MR#:
Sex:
Race:

Address:
Phone:
Parents Names:

Diagnosis
Diagnosis:
Date of Dx:
Age at Dx:

Histology/Pathology:
Stage/Class:Metastatic Sites:

Date off Tx:
Age off Tx:

Cytogenetics:
Presenting Sx:

Family History of Cancer:

Medical Team
Primary Oncologist:

Surgeon:Primary Physician:Sub-specialists:

Chemotherapy History
Initial BSA:
Protocol Reason

Start Date

List of Drugs

Stop Date

#1

#2

#3

Drug

Adriamycin
Idarubicin
Daunomycin
VP-16

Cumulative
Dose

Drug

mg/m2 Cyclophosphamide
mg/m2 Ifosfamide
mg/m2 Cisplatin
g/m2 Carboplatin

Cumulative
Dose

Drug

g/m2 Procarbazine
g/m2 Bleomycin
mg/m2 HD MTX(>1g/m2)
mg/m2

Clinical Forms: Combined Clinical Summary/Off-Therapy Evaluation
Children’s Hospital of Philadelphia

Cumulative
Dose

g/m2
u/m2
g/m2

Page 1 of 4

Appendix 3: Sample Forms and Letters

Surgical History
Date

Surgery

Surgeon

Site

Dose

Radiation History
Date

Bone Marrow Transplant
Date:
Type:
Prep Regime:

Agent
Melphalan
Cyclophosphamide

BusulfanAcute GVHD:
Chronic GVHD:

Cumulative Dose

Agent

Mg/m2 or kg
Mg/m2 or kg
Mg/m2 or kg

Cumulative Dose
Mg/m2 or kg
Mg/m2 or kg
Mg/m2 or kg

Complications on Therapy
Neuropsych: Y/N
Neurology: Y/N
Pulmonary: Y/N
Cardiac: Y/N
Vascular: Y/N

Renal: Y/N
GI/GU: Y/NHepatic: Y/N
GYN: Y/N
EENT: Y/N

Endocrine: Y/N
Growth: Y/N
Skin: Y/N
Muscle/Bone: Y/N
Orthopedic: Y/N

Clinical Forms: Combined Clinical Summary/Off-Therapy Evaluation
Children’s Hospital of Philadelphia

Dental: Y/N
Infections: Y/N
Nutrition: Y/N
SMN: Y/N

Page 2 of 4

Appendix 3: Sample Forms and Letters

Complications off Therapy
Neuropsych: Y/N
Neurology: Y/N
Pulmonary: Y/N
Cardiac: Y/N
Vascular: Y/N

Renal: Y/N
GI/GU: Y/NHepatic: Y/N
GYN: Y/N
EENT: Y/N

Endocrine: Y/N
Growth: Y/N
Skin: Y/N
Muscle/Bone: Y/N
Orthopedic: Y/N

Dental: Y/N
Infections: Y/N
Nutrition: Y/N
SMN: Y/N

Education/Vocation/Career/Psychosocial Information
Education:
Grade Level:
Special Ed:
Resource:
Date/Results

Problem

OVR: Y/N
Employment: Y/N
Occupation:

Marital Status:
Pregnancies:
Offspring:

Neuropsychology Testing:Date/Results

Date/Results

Date of Evaluation/ Intervention
Who?

Clinical Forms: Combined Clinical Summary/Off-Therapy Evaluation
Children’s Hospital of Philadelphia

Last Follow-up

Page 3 of 4

Appendix 3: Sample Forms and Letters

Review of Off-Therapy Evaluations
SystemTest

Hearing/
Vision

Audio

Date

Date

Date

Date

Date

Date

Date

Date

Optho

Endo

T4/TSH
SomatoC
IGFBP3
FSH/LH

Estro/
Testost

Pulm

Bone
Age
PFT's

Cardiac

Echo
EKG
HolterExc
Stress
Lipids

Renal

Heme

BUN/
Cr

CrCl
BP
CBC
ESR

Chemisty

ID

Hep C

HIV
Flu
VaccinePneumovax
Meningovax
HIB
PCN
ProphylRadiology

CXR
CT/MR/
US
DEXA/
PQCT

Clinical Forms: Combined Clinical Summary/Off-Therapy Evaluation
Children’s Hospital of Philadelphia

Page 4 of 4

Appendix 3: Sample Forms and Letters

H & P FORM
City of Hope
Duarte, CA

Appendix 3: Sample Forms and Letters

Clinical Forms: H&P
City of Hope

Page 1 of 2

Appendix 3: Sample Forms and Letters

Clinical Forms: H&P
City of Hope

Page 2 of 2

Appendix 3: Sample Forms and Letters

H & P FORM - TRANSPLANT
Helen DeVos Children’s Hospital
Grand Rapids, MI

Appendix 3: Sample Forms and Letters
PEDIATRIC BLOOD & BONE MARROW TRANSPLANTATIONAFTER-CARE AND TRANSITION (ACT) CLINIC

Patient:

MR#:

Vital Signs:

B/P:

HR:

Hgt:

cm/in

DOT:

RR:

T:

Wgt:

General Health:

Recent PCP office visits?
Recent subspecialty office visits?
Dental?
Ophthalmology?

Flu Vaccination:

yes

year

kg/lbs

O2 Sats:%noMedications:

Recent Family History:(malignancies, deceased,etc)
Psychosocial:

School:grade:
grades:time spent on TV/media/video games:

Resource help? IEP?

Extracurricular activities:

Hobbies:
Living conditions:
Parents:
Sibs:

marrieddivorced
separated(full ____, half ____, step ____)

REVIEW OF SYSTEMS:
General

Skin

yes

no

other

excessive weight gain/loss
fatiguemalaisesleeping patternrash
dry skinbruises
new moles or changes in mole size/color
central line history

Clinical Forms: H&P (Transplant)
Helen DeVos Childen’s Hospital

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Appendix 3: Sample Forms and Letters

REVIEW OF SYSTEMS (con't):
Head
Eyes

Ears

Nose

Mouth/Throat

Neck
Lungs

Cardiovascular

Abdomen

G/U♂

♀

Musculoskeletal

Neurological

yes

no

other

chronic headaches, migraines, etc.
thin hair growthalopecia
blurred/double vision
glasses
dry eyestinnitus
loss of hearing
chronic otitis media
epistaxis
chronic rhinorrhea
chronic congestion
excessive dental caries
gum bleeding
mucosal ulcers
dry mouth
sore throat
odynophagia
other:
swelling
stiffnesscoughexercise-induced coughresting shortness of breath
dyspnea w/ exertion
orthopnea
hemoptysis
other:
chest pain
exercise stamina
extremity swelling
extremity cyanosis
appetitenutrition
nausea/emesis
bloating
cramping
diarrhea
rectal bleeding
testicular/scrotal swelling
testicular self exam
early a.m. erection
sexual arousal
sexually active
SBE
mensessexually active
prophylaxis
joint pain
decreased ROM
myalgias
paresisdizzysyncopefallsparesthesia

Clinical Forms: H&P (Transplant)
De Vos Childen’s Hospital

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Appendix 3: Sample Forms and Letters

PSYCHOSOCIAL ASSESSMENT FORM
(SOCIAL WORK)
University of Michigan
Ann Arbor, MIAppendix 3: Sample Forms and Letters

Medical Social Work Psychosocial Assessment
Identifying Information/Presenting Problem:
Patient History:
Abuse/Violence:
Substance Use/Abuse:
Family/Social Support:
Family genogram:
Family functioning/sibling relationships:
Memory/meaning of treatment (patient/parent):
Meaning/significance of cancer/survivorship:
Emotional coping/treatment, if any:
Spiritual/faith support:
School/academic functioning:
Special Ed services:
Extracurricular activities/sports:
Relationships: friends/significant others:
Recreational pursuits:
Awareness/concern with Late Effects:
FINANCIAL/INSURANCE:
Clinical Assessment:Intervention/Education:
Discharge Plan/Treatment plan:

Clinical Forms: Psychosocial Assessment (Social Work)
University of Michigan

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Appendix 3: Sample Forms and Letters

NUTRITION ASSESSMENT FORM
University of Michigan
Ann Arbor, MIAppendix 3: Sample Forms and Letters

Nutrition Assessment
Pediatric Oncology/Long Term Follow UP Clinic
Name: _________________________________

Date:____________

CPI# __________________________________

Diagnosis:_____________________________Date of diagnosis: _________

Treatment:______________________________________________________

Medications: ______________________________________________________
Supplements: ______________________________________________________

Anthropometrics
Weight: ______kg ______# _____%ile
Usual Body Weight ___________%UBW
Ideal Body Weight ___________%IBW
Height: ________cm_____%ile
BMI:________
Weight/height /growth: _________________________________________________

Food Intake Information/Diet History
Appetite (circle one): poor

Food Allergies/Intolerances?

Lifestyle Factors:
Exercise?
Smoking?
Alcohol?

fair

good

excellent

Yes ______________________________________
No

Yes __________________________________________
Yes __________________________________________
Yes __________________________________________

No
No
No

Social History:

Clinical Forms: Nutrition Assessment
University of Michigan

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Appendix 3: Sample Forms and Letters

Patient/Family Nutrition Concerns:__________________________________
Diet History:
Breakfast

Lunch

Dinner

Snack

Snack

Snack

Assessment
Patient is: (circle one)
Patient is: (circle one)
Current diet appears:

maintaining,
maintaining,

Well balanced
Lacking in: calcium
Excessive in: calories

calories
fatdecreasing,growing

proteinsugar

gainingfat
salt

weight.
in height.

fiber
iron
fast foodWritten patient education provided:
1. _________________________________________
2. _________________________________________
3. _________________________________________
4. _________________________________________
Recommendations:
1. ________________________________________________________________________________________________________________________________
2. _________________________________________________________________________________________Pediatric Oncology Registered Dietitian

Clinical Forms: Nutrition Assessment
University of Michigan

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Appendix 3: Sample Forms and Letters

PSYCHOLOGY ASSESSMENT FORM
City of Hope
Duarte, CA

Appendix 3: Sample Forms and Letters

Clinical Forms: Psychology Assessment
City of Hope

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Appendix 3: Sample Forms and Letters

Clinical Forms: Psychology Assessment
City of Hope

Page 2 of 4

Appendix 3: Sample Forms and Letters

Clinical Forms: Psychology Assessment
City of Hope

Page 3 of 4

Appendix 3: Sample Forms and Letters

Clinical Forms: Psychology Assessment
City of Hope

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Appendix 3: Sample Forms and Letters

PATIENT EDUCATION/HEALTH LINKS FORM
Carolinas Medical Center
Charlotte, NC

Appendix 3: Sample Forms and Letters

PATIENT EDUCATION/HEALTH LINKS FORM
Documentation of Educational Information
Health Link Brochures

Date Reviewed and given to patient

Avascular Necrosis
Bladder HealthBleomycin Alert
Bone Health
Breast Cancer
Breast Cancer: Are you at Risk?
Central Adrenal Insufficiency
Colorectal Cancer
Dental Health
Emotional Issues
Eye Problems
Female Health Issues
GI HealthGrowth hormone deficiency
Health Promotion
Hearing Problems
Heart and Anthracyclines
Heart and Radiation
Hepatitis
Hepatitis
Hyperprolactinemia
Hypopituitarism
Intro. To LTFU after Treatment
Kidney Health
Limb Salvage
Liver HealthMale Health Issues
Pain
Peripheral Neuropathy
Precocious Puberty
Pulmonary Health
Raynaud’s Phenomena
Reducing Risk of Secondary Ca
School and Learning Issues
Scoliosis
Single Kidney
Skin Health
SpleenSplenic Precautions
Thyroid Problems________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

Clinical Forms: Patient Education/Health Links
Carolinas Medical Center

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Appendix 3: Sample Forms and Letters

Other Educational Information
Cancer Survivor Summary
Self-Breast ExamSun Safety
Testicular Self exam
Tobacco Education/Cessation
Letters
To patient
To PCPTo other specialist

Clinical Forms: Patient Education/Health Links
Carolinas Medical Center________________________________________________________________________________________________________________________________________________________________________________________________________

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Appendix 3: Sample Forms and Letters

QUESTIONNAIRESBASELINE QUESTIONNAIRE(ENGLISH AND SPANISH)
Cook Children’s Hospital
Fort Worth, TX

Appendix 3: Sample Forms and Letters

Questionnaires: Baseline (English)
Cook Children’s Hospital

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Appendix 3: Sample Forms and Letters

Questionnaires: Baseline (English)
Cook Children’s Hospital

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Appendix 3: Sample Forms and Letters

Questionnaires: Baseline (Spanish)
Cook Children’s Hospital

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Appendix 3: Sample Forms and Letters

Questionnaires: Baseline (Spanish)
Cook Children’s Hospital

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Appendix 3: Sample Forms and Letters

COMBINED ANNUAL QUESTIONNAIRE
WITH H&P, PATIENT EDUCATION,
AND FAMILY/PREGNANCY HISTORY FORMS
St. Jude Children’s Research Hospital
Memphis, TNAppendix 3: Sample Forms and Letters

Questionnaires: Combined Annual + H&P + Education + Fam Hx
St. Jude Children’s Research Hospital

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Appendix 3: Sample Forms and Letters

Questionnaires: Combined Annual + H&P + Education + Fam Hx
St. Jude Children’s Research Hospital

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Appendix 3: Sample Forms and Letters

Questionnaires: Combined Annual + H&P + Education + Fam Hx
St. Jude Children’s Research Hospital

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Appendix 3: Sample Forms and Letters

Questionnaires: Combined Annual + H&P + Education + Fam Hx
St. Jude Children’s Research Hospital

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Appendix 3: Sample Forms and Letters

Questionnaires: Combined Annual + H&P + Education + Fam Hx
St. Jude Children’s Research Hospital

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Appendix 3: Sample Forms and Letters

Questionnaires: Combined Annual + H&P + Education + Fam Hx
St. Jude Children’s Research Hospital

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Appendix 3: Sample Forms and Letters

Questionnaires: Combined Annual + H&P + Education + Fam Hx
St. Jude Children’s Research Hospital

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Appendix 3: Sample Forms and Letters

Questionnaires: Combined Annual + H&P + Education + Fam Hx
St. Jude Children’s Research Hospital

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Appendix 3: Sample Forms and Letters

Questionnaires: Combined Annual + H&P + Education + Fam Hx
St. Jude Children’s Research Hospital

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Appendix 3: Sample Forms and Letters

Questionnaires: Combined Annual + H&P + Education + Fam Hx
St. Jude Children’s Research Hospital

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Appendix 3: Sample Forms and Letters

ANNUAL QUESTIONNAIREUCSFSan Francisco, CA

Appendix 3: Sample Forms and Letters

Questionnaires: Annual
University of California San Francisco

Page 1 of 4

Appendix 3: Sample Forms and Letters

Questionnaires: Annual
University of California San Francisco

Page 2 of 4

Appendix 3: Sample Forms and Letters

Questionnaires: Annual
University of California San Francisco

Page 3 of 4

Appendix 3: Sample Forms and Letters

Questionnaires: Annual
University of California San Francisco

Page 4 of 4

Appendix 3: Sample Forms and Letters

ANNUAL QUESTIONNAIRE: CHILD/TEEN(ENGLISH & SPANISH)
City of Hope
Duarte, CA

Appendix 3: Sample Forms and Letters

Questionnaires: Annual (Child/Teen - English)
City of Hope

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Appendix 3: Sample Forms and Letters

Questionnaires: Annual (Child/Teen - English)
City of Hope

Page 2 of 7

Appendix 3: Sample Forms and Letters

Questionnaires: Annual (Child/Teen - English)
City of Hope

Page 3 of 7

Appendix 3: Sample Forms and Letters

Questionnaires: Annual (Child/Teen - English)
City of Hope

Page 4 of 7

Appendix 3: Sample Forms and Letters

Questionnaires: Annual (Child/Teen - English)
City of Hope

Page 5 of 7

Appendix 3: Sample Forms and Letters

Questionnaires: Annual (Child/Teen - English)
City of Hope

Page 6 of 7

Appendix 3: Sample Forms and Letters

Questionnaires: Annual (Child/Teen - English)
City of Hope

Page 7 of 7

Appendix 3: Sample Forms and Letters

Questionnaires: Annual (Child/Teen - Spanish)
City of Hope

Page 1 of 7

Appendix 3: Sample Forms and Letters

Questionnaires: Annual (Child/Teen - Spanish)
City of Hope

Page 2 of 7

Appendix 3: Sample Forms and Letters

Questionnaires: Annual (Child/Teen - Spanish)
City of Hope

Page 3 of 7

Appendix 3: Sample Forms and Letters

Questionnaires: Annual (Child/Teen - Spanish)
City of Hope

Page 4 of 7

Appendix 3: Sample Forms and Letters

Questionnaires: Annual (Child/Teen - Spanish)
City of Hope

Page 5 of 7

Appendix 3: Sample Forms and Letters

Questionnaires: Annual (Child/Teen - Spanish)
City of Hope

Page 6 of 7

Appendix 3: Sample Forms and Letters

Questionnaires: Annual (Child/Teen - Spanish)
City of Hope

Page 7 of 7

Appendix 3: Sample Forms and Letters

ANNUAL QUESTIONNAIRE: ADULT(ENGLISH & SPANISH)
City of Hope
Duarte, CA

Appendix 3: Sample Forms and Letters

Questionnaires: Annual (Adult - English)
City of Hope

Page 1 of 7

Appendix 3: Sample Forms and Letters

Questionnaires: Annual (Adult - English)
City of Hope

Page 2 of 7

Appendix 3: Sample Forms and Letters

Questionnaires: Annual (Adult - English)
City of Hope

Page 3 of 7

Appendix 3: Sample Forms and Letters

Questionnaires: Annual (Adult - English)
City of Hope

Page 4 of 7

Appendix 3: Sample Forms and Letters

Questionnaires: Annual (Adult - English)
City of Hope

Page 5 of 7

Appendix 3: Sample Forms and Letters

Questionnaires: Annual (Adult - English)
City of Hope

Page 6 of 7

Appendix 3: Sample Forms and Letters

Questionnaires: Annual (Adult - English)
City of Hope

Page 7 of 7

Appendix 3: Sample Forms and Letters

Questionnaires: Annual (Adult: Spanish)
City of Hope

Page 1 of 7

Appendix 3: Sample Forms and Letters

Questionnaires: Annual (Adult: Spanish)
City of Hope

Page 2 of 7

Appendix 3: Sample Forms and Letters

Questionnaires: Annual (Adult: Spanish)
City of Hope

Page 3 of 7

Appendix 3: Sample Forms and Letters

Questionnaires: Annual (Adult: Spanish)
City of Hope

Page 4 of 7

Appendix 3: Sample Forms and Letters

Questionnaires: Annual (Adult: Spanish)
City of Hope

Page 5 of 7

Appendix 3: Sample Forms and Letters

Questionnaires: Annual (Adult: Spanish)
City of Hope

Page 6 of 7

Appendix 3: Sample Forms and Letters

Questionnaires: Annual (Adult: Spanish)
City of Hope

Page 7 of 7

Appendix 3: Sample Forms and Letters

LETTERSAPPOINTMENT LETTER
Helen DeVos Children’s Hospital
Grand Rapids, MI

Appendix 3: Sample Forms and Letters

Letters: Appointment Letter
Helen DeVos Children’s Hospital

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Appendix 3: Sample Forms and Letters

Letters: Appointment Letter
Helen DeVos Children’s Hospital

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Appendix 3: Sample Forms and Letters

APPOINTMENT LETTER
Cook Children’s Hospital
Fort Worth, TX

Appendix 3: Sample Forms and Letters

Letters: Appointment Letter (English)
Cook Children’s Hospital

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Appendix 3: Sample Forms and Letters

APPOINTMENT REMINDER LETTER(ENGLISH & SPANISH)
Cook Children’s Hospital
Fort Worth, TX

Appendix 3: Sample Forms and Letters

Letters: Appointment Letter Reminder (English)
Cook Children’s Hospital

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Appendix 3: Sample Forms and Letters

Letters: Appointment Letter Reminder (Spanish)
Cook Children’s Hospital

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Appendix 3: Sample Forms and Letters

AUTHORIZATION LETTERS(STATE FUNDED PROGRAM)
Pediatric and Adolescent Hematology-Oncology
Associates/Miller Children’s HospitalLong Beach, CA

Appendix 3: Sample Forms and Letters

Letters: Authorization – State Funded Program (A.L.L. Patient)Miller Children’s Hospital

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Appendix 3: Sample Forms and Letters

Letters: Authorization – State Funded Program (Brain Tumor Patient)Miller Children’s Hospital

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Appendix 3: Sample Forms and Letters

POST-CLINIC LETTER TO PATIENT
Carolinas Medical Center
Charlotte, NC

Appendix 3: Sample Forms and Letters

Letters: Post-Clinic Letter to Patient
Carolinas Medical Center

Page 1 of 2

Appendix 3: Sample Forms and Letters

Letters: Post-Clinic Letter to Patient
Carolinas Medical Center

Page 2 of 2

Appendix 3: Sample Forms and Letters

POST-CLINIC LETTER TO PHYSICIAN
University of Michigan
Ann Arbor, MIAppendix 3: Sample Forms and Letters

Letters: Post-Clinic Letter to Physician
University of Michigan

Page 1 of 2

Appendix 3: Sample Forms and Letters

Letters: Post-Clinic Letter to Physician
University of Michigan

Page 2 of 2

Appendix 3: Sample Forms and Letters

POST-CLINIC LETTER TO PHYSICIANUCSFSan Francisco, CA

Appendix 3: Sample Forms and Letters

Letters: Post-Clinic Letter to Physician
University of California San Francisco

Page 1 of 5

Appendix 3: Sample Forms and Letters

Letters: Post-Clinic Letter to Physician
University of California San Francisco

Page 2 of 5

Appendix 3: Sample Forms and Letters

Letters: Post-Clinic Letter to Physician
University of California San Francisco

Page 3 of 5

Appendix 3: Sample Forms and Letters

Letters: Post-Clinic Letter to Physician
University of California San Francisco

Page 4 of 5

Appendix 3: Sample Forms and Letters

Letters: Post-Clinic Letter to Physician
University of California San Francisco

Page 5 of 5

LONG-TERM FOLLOW-UP PROGRAMRESOURCE GUIDE