bluuebunny/crossref_metadata_2025 huggingface dataset:
Effect of the European Organization for Research and Treatment of Cancer (EORTC) on social life for cancer survivors in Europe.
Authors: Liu Lifang , Mosser Lotte , Reijneveld Jaap C. , Meunier Francoise
Published: February 2017

218

Background: Cure is not a dream but a reality for a large group of cancer patients nowadays. In Europe around 4 million patients successfully lived beyond the 5th year after cancer diagnosis. With improved survival rate and an ageing population, there will be more survivors in the near future. They wish to enter or maintain in the job market, and to finance desired house and insurance. However, the lack of sufficient data and knowledge on the ability to perform gets in the way on their path to normal social life. Methods: From 2013 the EORTC set the scene addressing societal issues faced by cancer patients involving key stakeholders including cancer patients themselves, care givers, bankers, insurers, employers and policy makers. These efforts have matured into an innovative research infrastructure in Europe integrating existing patients’ cohorts, including data from clinical trials, (population-based) cancer registries, surveys and social media. The research scope covers from quantifying the magnitude of the problem, assessing the economic burden, to formulating evidence-based EU recommendations for rehabilitation of cancer survivors. Particularly, variation and inequality across member states will be extensively investigated. Results: EORTC has a long tradition of collection data and follow-up patients since 50 years. Currently he is forming a consortium with the European Commission Joint Research Center (EC-JRC), European Network of Cancer Registry (ENCR), and other key experts in EU on the project. Several nation-wide research models are being built to address country-specific questions that cancer survivors face. Conclusions: A sustainable research infrastructure with dedicated partners and network address cancer survivorship is being built in Europe. This joint effort saves repetition in collecting data that already exist, synergizes expertise and methodology in addressing cancer survivorship questions.
Cancer-related distress and unmet needs among newly diagnosed and longer-term cancer survivors from a community-based distress screening program.
Authors: Buzaglo Joanne S. , Miller Melissa F , Kennedy Victoria , Longacre Margaret , Golant Mitch , Robinson Patricia A.
Published: February 2017

220

Background: As survival rates increase among cancer patients, quality of life needs become more salient. Cancer Support Source (CSS) is a distress screening, referral and follow up program that uses a validated distress screening tool and referral algorithm to link cancer patients to resources tailored to their needs. The objective of this study was to describe psychosocial concerns and unmet needs at different times since cancer diagnosis. Methods: English speaking cancer survivors (n = 905) across 26 affiliates of a nationwide cancer support organization participated in the CSS program by first completing a screening tool, including a 4 item depression subscale. Participants rated the level of concern (0 to 4) about 15 items and identified the help they wanted for each item (talk with a member of your health care team and/or connect you with online resources). We used regression analysis, adjusting for age, to examine differences by time since diagnosis ( < 1 y; ≥ 1 y) in level of distress; type of concerns (rated ≥ 2); and items selected to talk with the health care team. Results: The sample was 78% female, 10% Latino, 9% Black, and median age 57 y. 41% were breast cancer survivors, 6% lung, and 6% colorectal. More than half were within 1 y of their diagnosis (61%, n = 507); 39% ≥ 1 y (n = 331). Those newly diagnosed ( < 1 y) had significantly higher levels of distress (p = 0.011); increased risk for depression (p = 0.007); and more likely to be concerned about changes in work, school, or home life; body image; feeling nervous or afraid; worry about the future; and making a treatment decision (p < 0.05). Among those who indicated that an item was a concern, newly diagnosed patients were significantly more likely to want to talk to their health care team about pain; financial worries; exercising; feeling lonely or isolated; feeling nervous or afraid; and worry about the future (p < 0.05). Conclusions: These findings suggest that patients are more distressed and more likely to want to talk about their psychosocial needs within the first year of a cancer diagnosis. Future research should evaluate efforts to provide tailored resources within the first year of a diagnosis when distress levels are highest.
A pilot study of a low-intensity health education intervention on activity and quality-of-life measures for cancer survivors.
Authors: Basu Arnab , Bhattacharya Sreyasi , Miller Kenneth David
Published: February 2017

221

Background: There is an increasing need for effective targeted health education interventions for cancer survivors related to dietary habits, physical activity and cancer related psychosocial challenges. Methods: We designed an educational program for cancer survivors (n=37 ) presenting for outpatient follow up visits. The program was composed of a 30-60 minute survivorship visit and a series of six 7-10 minute video tutorials shown two at a time either remotely or in person every two months over a six month period about the importance of diet, physical activity and psychosocial aspects of cancer survivorship. Baseline assessments of perceived state of health, physical activity, diet, and the Impact of cancer were made through a series of validated questionnaires, including SF-12, IPAQ, FRDHQ and IOC. Patients were then sent another follow-up survey in approximately 1 year to be filled online; those who could not respond were followed up by phone. Weight and height data were registered during 1 year follow-up visit. Results: 37 Patients initially participated in the study, of these, all 37 either replied/were followed up after a 1 year time period. 87% were women and 70% were African American, 25(66%) of patients had a prior diagnosis of breast carcinoma, 4 (11%) had a prior diagnosis of colorectal Carcinoma. 16 (43%), 13(35%) and 7(18%) of patients had <5 , 5-10 and >10 years since last surgery/chemotherapy. We demonstrated that this type of low intensity intervention is feasible in a medically underserved group of cancer survivors. There was a trend towards an improved Physical Composite Score (25.1 vs 43.1) and Mental Composite Score (54.1 vs 58.1) on the SF-12 questionnaire at the time of follow-up, indicating improved health and functional well being. There were no large noticeable differences in fat related dietary habits. Due to a small sample size, stated differences did not reach the threshold of statistical significance. Conclusions: Our pilot study suggests that a low intensity intervention is feasible and may be associated with improvement in health behaviors in cancer survivors. Larger studies are needed to explore the efficacy of this, and similar interventions.
A single-center survey of health-related quality of life among acute myeloid leukemia survivors in first complete remission.
Authors: Cheng Mok-Chung Jennifer , Smith B. Douglas , Hourigan Christopher Simon , Gojo Ivana , Pratz Keith William , Blackford Amanda , Smith Thomas J.
Published: February 2017

223

Background: To better understand adult acute myeloid leukemia (AML) survivorship and health related quality of life, we piloted a survey exploring patient reported outcomes for patients in first complete remission (CR) to determine if patients feel the survey is relevant to their overall well-being. Methods: A cross-sectional survey measuring: quality of life, physical, role, emotional, cognitive, social functioning (EORTC QLQ-C30 v 3.0); physical, psychological, social, and spiritual well-being (Quality of Life-Cancer Survivor (QOL- CS) scale); fatigue (Functional Assessment of Chronic Illness Therapy – Fatigue Scale (FACIT-Fatigue)); anxiety and depression (Hospital Anxiety and Depression Scale (HADS)); sociodemographic and 5 open-ended questions. Results: 18 participants completed the survey; mean age was 57.2 years. Nine patients were in CR for <2 years, and 9 were in CR for ≥2 years. Participants scored well on the EORTC QLQ-C30 and reported symptoms ranging from 11% (constipation) to 83% (fatigue). The FACIT-Fatigue (worst 0-best 52) mean score was 28.7 and median score was 33.5 (normal ≥30). On the HADS anxiety scale, 2 participants scored in the abnormal range. One scored in the abnormal range on the depression scale. On the QOL-CS, participants scored above 6 out of 10 in all domains, with exceptions of the psychological subscales of distress and fear (Table 1). Most participants felt the survey was completely or mostly relevant (88.8%) in understanding their quality of life. Most felt the length was optimal (77.8%). Conclusions: Most survivors scored well on quality of life and well-being, but with ongoing fatigue, distress, and fear of future tests and recurrence. Few consistently scored worse on the scales. There may be a population coping less well and it would be informative for survivorship programs to prospectively characterize their medical and psychosocial-spiritual needs. [Table: see text]
Health-related quality of life in breast cancer patients prior to and 3 years following adjuvant radiotherapy: Comparison between conventional and short-course, image-guided radiotherapy.
Authors: Adriaenssens Nele , De Ridder Mark , Lamote Jan , Fontaine Christel , Van Parijs Hilde , Storme Guy , Versmessen Harijati , Miedema Geertje , De Greve Jacques , Vinh-Hung Vincent
Published: February 2017

247

Background: Breast cancer is nowadays the most common cause of cancer death in the female population. A very commonly used treatment is radiotherapy (RT). Due to improvements of medical imaging and RT, a combination can be used resulting in image guided radiotherapy (TT). The aim of the present study is to investigate the difference in health related quality of life (HRQoL) of breast cancer patients before and 3 years after post-operative conventional radiotherapy (CRT) and TT. Methods: 120 participating patients were randomly allocated to either CRT or TT. The CRT group received 50Gy/25 fractions over a 5 week period (2Gy/fraction) and an additional boost of 16Gy in 8 fractions over 2 weeks. The TT group received 42 Gy in 15 fractions over 3 weeks (2.8 Gy/fraction) and simultaneously an integrated boost of 0,6Gy/fraction. HRQoL was evaluated using the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 and -BR23 (breast cancer module). Questionnaires were filled in before treatment (T0), right after finishing RT (T1) and at 3 months (T2), 1 year (T3), 2 years (T4) and 3 years (T5) follow up. Results: At T1 no statistically significant differences between the two treatment arms were found except global health status for which TT group scored worse than CRT. At T5, less severe constipation, diarrhoea, breast symptoms, upset by hair loss and more severe insomnia was found in TT compared to CRT, but the differences did not reach significance. Functional scales were comparable in treatment arms. Conclusions: Between the two treatment arms, no statistically significant differences were found at T5 but clinically meaningful differences in symptom scales favoured TT. Our study confirms the preliminary results of Versmessen et al. (BMC Cancer, 2012) in particular that a shorter more intensive fractionation schedule, using TT did not impair HRQoL in breast cancer patients. Clinical trial information: NCT00459628.
Advancing Survivors’ Knowledge (ASK) about skin cancer study: A randomized intervention within the Childhood Cancer Survivor Study (CCSS).
Authors: Keske Robyn , Armstrong Gregory T. , Davine Jessica , Gibson Todd M. , Mertens Ann , McDonald Aaron , Marghoob Ashfaq A. , Daniel Casey , Geller Alan
Published: February 2017

255

Background: Adult survivors of childhood cancer who received radiation therapy have high rates of basal cell carcinoma and melanoma compared with the general population. Both the National Cancer Institute and Children’s Oncology Group Guidelines recommend regular skin self-checks and annual clinical skin exams for survivors. The ongoing ASK randomized intervention trial aims to identify strategies, including use of mobile health technology, which may improve early detection practices. Methods: Participants previously treated with radiation and had no previous history of skin cancer were identified, and eligible participants are currently being enrolled. 800 participants are being randomized into: (1) patient activation and education (PAE) including targeted print and web-based materials and monthly text messages prompting skin checks and driving participants to the ASK website; (2) PAE + physician activation (PAE + MD) adding targeted physician activation/educational materials about survivors’ increased skin cancer risk and recommendations for conducting full-body skin examinations; (3) PAE + MD + teledermoscopy (PAE + MD +TD). The TD group receives a dermatoscope that attaches to their smartphone to photograph suspect moles for review by the study dermatologist. Results: To date, 1,302 survivors are eligible. In the first five months of recruitment, 80% of the initial 400 eligible participants have responded to the study invitation and 248 participants (62%) have enrolled. Twenty-six percent of participants have visited the website and 12 images of suspicious moles have been submitted for review. Completion of recruitment is anticipated by spring 2016. Conclusions: The ASK study addresses screening barriers by providing educational and motivational information for both survivors and physicians on the value of regular and thorough skin examinations. It also determines whether use of innovative mobile health technology activates survivors to conduct skin self-examinations, request physician examinations, and obtain treatment when worrisome lesions are found. Clinical trial information: NCT 02046811.
Survivors preferences about the role of the oncologist and primary care provider.
Authors: Tralongo Paolo , Giuliano Sebastiano Rametta , Di Mari Anna Maria , Bordonaro Sebastiano , Romano Fabrizio , Pumo Vitalinda , Iacono Margherita , Lanteri Eleonora , Tralongo Antonino Carmelo , Roccaro Sebastiana , Iemmolo Sebastiana
Published: February 2017

259

Background: Oncologist and Primary Care Provider are both involved in cancer patients follow-up. Patient's preference is an important issue. Aims This observational study was made to investigate: a) if and how long after the diagnosis the patient prefers to be followed by PCPs, Oncologist or both; b) if they prefer to be followed in the same institute where they received acute phase care; c) if it's important to receive recommendations about their lifestyle. Methods: 150 patients were recruited between May and June 2015 in the transient phase. They were affected by different tumors (breast, colon, prostate, melanoma, gynecological cancers and lymphoma disease) 53 pts under 3 years, 38 pts 5 years, 59 pts 7 years since the diagnosis. A questionnaire investigating the aims of the study was administered. Results: Among the pts on 3 years follow-up, only one preferred to be followed by the PCPs for logistical reasons; 24/53 patients after 5 years follow-up preferred PCPs and 18/53 preferred to be followed only by the oncologist because of more competence. In the 5 and 7 years follow-up 80/97 pts preferred to be exclusively followed by the oncologist for these reasons: A) poor PCPs involvement during the acute phase. B) oncologist expertise in acute phase, follow-up and possible relapse; c) lack of interest shown by the PCPs for survivorship care plan. All pts (150) gave positive response on receiving advices about their lifestyle (diet, sport activities, etc...). For 63% of the patients a unique structure would be suitable for receiving follow-up too. Conclusions: The preferences of patients, followed in the transient phase, suggest that fear of relapse guides patient's choice and the relationship with the oncologist offers security.
Association between tumor stage of first non-metastatic breast cancer and second contralateral breast cancer.
Authors: Raghavendra Akshara , Sinha Arup Kumar , Hsu Limin , Patangan Modesto , Le-Petross Huong T. , Bevers Therese Bartholomew , Tripathy Debu , Bedrosian Isabelle , Barcenas Carlos Hernando
Published: February 2017

260

Background: Female breast cancer survivors have an average lifetime risk of 4-8% to develop a contralateral breast cancer (CBC).It is unclear if the tumor stage of the first breast cancer is associated with the development of a second CBC. Methods: We performed a retrospective analysis of women who had a presenting diagnosis of non–metastatic breast cancer treated at MD Anderson Cancer Center between January 1997 and December 2013. Demographic, clinical, pathologic and treatment information were obtained from an institutional database. We excluded male patients, those treated outside MD Anderson, patients who underwent bilateral mastectomy, and those with unknown tumor characteristics. The primary endpoint was the development of CBC. The time to CBC was measured from the date of diagnosis of the first breast cancer. Patients who did not develop CBC were censored at death, or if alive, at the most recent follow-up visit. Index tumor stages were categorized as 0, I, II and III. Results: We analyzed 8,770 patients (median follow-up of 5.4 years), among whom 259 (3.0%) developed a CBC. The median follow-up time for stages 0-III was 4.9, 7.2, 5.2 and 3.9 years, respectively. The proportion of patients who developed a CBC by the stage of the index breast cancer was: stage 0: 0/403 (0.0%); stage I: 115/2,143 (5.4%); stage II: 110/4,220 (2.6%); stage III: 34/2,004 (1.7%). The overall median [quartile (Q) 1, Q3] time to the development of CBC was 3.2 (1.2, 6.3) years (stage 0: 0 (0.0, 0.0); stage I: 3.0 (1.2, 6.3); stage II: 4.4 (1.3, 6.9); stage III: 1.6 (0.8, 5.1) years). Conclusions: Patients with stage 0 breast cancer appear to have lower risk of developing a second CBC compared to women presenting with invasive disease. A more detailed analysis of this observation, including incorporation of hormone receptor status and receipt of endocrine therapy, is warranted to determine whether this observation suggests differing biologic risks or treatment/selection bias.
Impact of hereditary multigene panel testing for cancer survivors.
Authors: Kapoor Nimmi S. , Swisher Jennifer , McFarland Rachel E. , Patrick Mychael , Curcio Lisa D.
Published: February 2017

261

Background: Recently, genetic testing for hereditary cancer syndromes has seen numerous advances in testing spectrum, capability, and efficiency. This may have important implications for cancer survivors and their families. The purpose of this study is to evaluate the impact of reflex genetic testing with newer multi-gene panels on patients with prior negative BRCA1/2 tests. Methods: Data was collected retrospectively from patients who underwent multi-gene panel testing at one of three sites from a single institution between 8/2013-6/2015. Those with a personal history of breast or ovarian cancer and a prior negative BRCA1/2 test were included. Results: Of 914 patients who underwent multi-gene panel tests, 187 met study inclusion criteria. Ten patients (5.3%) were found to carry 11 pathogenic mutations, including 6 patients with mutations in CHEK2, 2 patients with mutations in PTEN, and 1 patient each with mutations in the following genes: BARD1, NF1, and RAD51C. One patient had two pathogenic mutations identified—CHEK2 and BARD1. Of 10 patients with mutations, 9 had a personal history of breast cancer diagnosed at a median age of 43 (range 35-52) and 1 had ovarian cancer diagnosed at age 65. A majority of mutation carriers underwent panel testing years after their cancer diagnosis (median 6 years, range 0.5-32 years) and none with delayed testing had undergone prophylactic contralateral mastectomy prior to the discovery of their gene mutation. All patients with mutations had a family history of at least one cancer, with most having a variety of cancer diagnoses in multiple relatives. Positive panel testing results altered clinical management in most patients, including addition of breast MRI, colonoscopy, or thyroid ultrasound depending on the gene mutation. After discovery of a PTEN mutation 19 years after her initial cancer treatment, one woman underwent bilateral prophylactic mastectomy and was found to have occult ductal carcinoma in situ. Conclusions: Cancer survivorship must incorporate advances in technology that may be beneficial even years after treatment has ended. Multi-gene panel testing can be applied in survivorship settings as a useful tool to guide screening recommendations.
Cancer survivors in Mexico: Analyzing their experience.
Authors: Suchil-Bernal Laura , Rodriguez-Velazquez Ana , Galindo-Vazquez Oscar , Meneses-Garcia Abelardo
Published: February 2017

262

Background: Every year the number of people diagnosed with cancer increases due to aging, population growth, and the increasing life expectancy rate in the general population. Survivors have to deal with the long-term side effects of treatment, as well as psychological disturbances, such as fear of cancer recurrence. Herein we present the results of a research project about the treatment side effects and psychosocial problems that cancer survivors in Mexico experience. Methods: In order to explore their experience as cancer survivors, 1240 participants from different parts of the country voluntarily replied a 32-item questionnaire. Results: Participants were primarily women (81%), with an average age of 55 years (20 to 91 years). 18% of the survivors were younger than 40 years old, whereas only 15% were 70 years or older. Most participants had a level of education beyond high-school (46%). The three types of cancer that were most commonly reported were: breast cancer (48%), cervical cancer (11%) and lymphoma (6.8%). The majority of the participant survivors (67%) were diagnosed with cancer 5 years ago or longer. Fatigue was the most common side effect (55%), followed by bone pain (45%) and skin changes (42%). 26% of the population experienced sexual dysfunction; 50% reported diminished interest in sex and 19% of female survivors expressed having pain during intercourse. Fear of cancer recurrence (60%) was the chief psychosocial concern of survivors; depression (55%) and anxiety (44%) were also reported. Furthermore, 55% of survivors indicated they had felt discriminated. Conclusions: This is the first report about matters affecting cancer survivors in Mexico. Further studies are required to explore survivors' main health problems in order to treat them within a multidisciplinary approach and to create specific assistance programs.
Evidence table development as a novel teaching tool in cancer survivorship education.
Authors: Shayne Michelle , Culakova Eva , Milano Michael T. , Constine Louis S.
Published: February 2017

3

Background: We established a novel curriculum in Cancer Survivorship Education (CSE), as a collaborative effort between our accredited training programs in Hematology/Oncology and Radiation Oncology. The conceptual framework for all our coursework in cancer survivorship was grounded in the recommendations from the Institute of Medicine report from 2006. As a means of refining our CSE curriculum, we introduced Evidence Table (ET) development. ETs are formatted summaries of methods, data, and outcomes from related studies used to answer specific questions. ETs facilitate the development of recommendations and standards of care. ET development was proposed to enhance the CSE experience allowing trainees to: 1) understand data supporting survivorship recommendations, 2) practice grading the evidence, 3) become more critical in appraisal of published studies, and 4) discover areas where further research is needed to substantiate cancer survivorship care plans. Methods: A total of 19 trainees participated in academic year 2013-2014 and 18 trainees in 2014-2015. Trainees were required to define key questions pertaining to survivorship, probe the literature for available data addressing these questions, and develop ETs in which the evidence was then graded. To ascertain the value of this experience from the trainees’ perspectives, anonymous and voluntary pre- and post-Workshop surveys were administered. The course was modified after the first academic year based on results of a trainee feed-back. Results: Following course modification in 2014-2015, 92% of trainees responded that they used some of the learned course information in their clinics. This represents significant improvement from 45% the previous year (p = 0.02). Significant improvement was observed (from 18% to 67%) in the perception that the course influenced trainees' approach to the medical literature. Ninety-two percent responded that they learned more about survivorship as a result of the CSE Workshop. All trainees reported that, to some extent, CSE has helped to make them better oncologists. Conclusions: ET development is a feasible, meaningful, and novel approach to fostering independent learning in cancer survivorship.
Prevalence of cognitive impairment in patients with hematologic cancers preceding stem cell transplantation: Program for healthy aging.
Authors: Edwards Beatrice Jara-Almonte , Holmes Holly Michelle , Valladarez Heather , Sun Ming , Khalil Peter , Nguyen Vu , Song Juhee , Champlin Richard E.
Published: February 2017

32

Background: Older adults, 65 years of age and older, with hematologic cancers may be at higher risk for cognitive impairment. It is postulated that the etiology of cognitive impairment in cancer may a combination of age-related and chemotherapy related cognitive impairment. Methods: We conducted a retrospective cohort analysis, of older adult patients 65 years and older evaluated at the Program for Healthy Aging at MD Anderson from January 1, 2013 through March 31, 2015. Cognitive assessment was evaluated through personal interview, and the Montreal cognitive assessment, functional assessment utilizing ADLs and IADLs. Screening for depression was conducted with the PHQ-9. Patients were interviewed regarding risk factors for dementia including depression, concussions, alcohol abuse, and family history of dementia. Level of education was assessed. Patients were euthymic. Cognitive impairment was defined as an abnormal MOCA without functional impairment, dementia was defined as an abnormal MOCA with functional impairment. Imaging and assessment for reversible factors of memory loss was conducted. SAS 9.4 (SAS Institute INC, Cary, NC) was used for data analysis. Results: The majority of these 62 patients had received chemotherapy for more than 2 years. Cognitive impairment and/or dementia were identified in 50 (80.6%) patients. Types of dementia included Alzheimer’s disease (n = 4, 8%), vascular dementia (n = 5, 10 %), and mixed dementia (n = 15, 30%).Mild cognitive impairment was evidenced in 14 cases (28%) The majority of cases of dementia with known stage were early stage dementia (n = 13, 72.2%), moderate stage dementia (n = 3, 16.7%), and advanced or severe dementia (n = 2, 11.1%). Brain imaging was performed identifying white matter microischemic changes, cerebrovascular accidents and brain atrophy in some cases. No significant thyroid abnormalities, B12 deficiency or other reversible causes were identified. Conclusions: Cognitive impairment and dementia are prevalent in older patients with hematologic malignancies. Identification and management of this condition may prevent delirium and hospital complications during stem cell transplantation.
Physician office visits for cancer survivors: Results from a national survey.
Authors: Halpern Michael T. , Vincent Brenda , Wollins Dana
Published: February 2017

33

Background: Cancer survivors may require specialized medical care to address their unique needs. However, there are few reports of nationally-representative outpatient-care patterns among survivors. Methods: We examined adult cancer survivors’ outpatient medical visits using data from the 2010 & 2012 National Ambulatory Medical Care Survey (NAMCS), a survey of U.S. physician office-based visits. Survivors were identified as individuals with medical visits related to cancer (based on physician diagnosis codes or patient-supplied reasons for visit) but who did not currently have cancer. Weights from the NAMCS were used to produce results corresponding to the overall U.S. population. Results: The NAMCS data included 477 survivor visits, corresponding to a two-year nationally-representative weighted total of 7,435,753 visits. Most survivors were White (75%); 13% were Black and 8% Hispanic. Most survivors had private insurance (49%) or Medicare (40%); 4% had Medicaid. Almost all (99%) saw a physician during the recorded visit. Only 20% of survivor’s outpatient visits were with oncologists; 20% were with primary care physicians, 12% with OB/GYN physicians, 5% with general surgeons, and more than one-third (35%) with other physician specialties. The most common services received during survivors' visits include general physical exams (57%) and imaging studies (20%). Visits with oncologists were less likely to include depression screening or counseling regarding nutrition, exercise, stress management, tobacco use, or weight reduction than were visits with other types of physicians. Conclusions: Cancer survivors experience diverse outpatient medical care interactions; only a minority of these are with oncologists. Oncologist visits are less likely to involve important counseling services. The NAMCS represents an important data source for examining outpatient care patterns among survivors.
Community survivorship program: Kansas Hope in the Valley program.
Authors: Chauhan Cynthia , Tan Winston
Published: February 2017

34

Background: Patient run community based survivorship programs are rare; most are affiliated with clinics and hospitals. Aim: To highlight a community based non-hospital affiliated program that had operated successfully for 32 years and review their best practices and challenges. Methods: Data collected from Hope in the Valley support group program. In Wichita, Kansas there is a patient formed community based support group/survivorship program supported and operated privately by survivors. Results: Todate a total of 16 disease specific and 13 general cancer support groups are affiliated with the organization and all the services are housed in a building. The support groups meet in different places and are grouped according to their proximity to their residences. Services provided include lodging assistance, women's boutique, support group meetings, transportation, patient assistance program, and a hospitality center. Every new patient with cancer in the community was given a referral to the center. Cancer support groups include breast, gynecologic, lung, kidney, gastrointestinal, lymphoma, leukemia, adolescent, childhood and general cancer group. In 2014 67, 709 patients attended support groups meetings and 2000 patients attended between January- April 2015. The hospitality center had 20, 160 visits and 19,877 physician's office treatment visits were conducted in 2014. There are 3 full time staff, 7 part time staff and 200 volunteers run the organization. Challenges include recruitment of volunteers, funding for the organization, existing as an independent program from churches, hospital, clinics, or national organizations, public awareness of the program, the governance and structure of the organization. Details of the challenges and how their organization is run will be presented. Many of the patients used their services often give back as volunteers, facilitators and others. Conclusions: This is a survivorship program run by patients, actively addressing patients concerns and issues. This could provide a framework for future groups that want to form a community based patient centered cancer support group.
A model for survivorship care plans (SCP) at a large academic institution.
Authors: Ward Andrew Joseph , Bell John Lawrence , Jerkins Lindsey
Published: February 2017

35

Background: In 2014, the American College of Surgeons Commission on Cancer mandated in Standard 3.3 that SCP be provided for all patients at the completion of active treatment. Minimum requirements for what SCP should include were provided; however, no standardized model was proposed. We outline how a large academic medical center approached this as an opportunity instead of an obstacle. Methods: A pilot for developing SCP for the University of Tennessee Medical Center Cancer Institute (UTMC, CI), where 2700 new cancer cases per year are seen, was created. Initially approached by the Division of Surgical Oncology, SCPs were established for all patients. This approach allowed the UTMC, CI to determine all best practices for meeting Standard 3.3. This pilot identified all major stake holders including mid-level providers who see follow-up patients, a physician champion, and the survivorship care plan that best fit our organizational challenges and work flow. Results: The described approach allowed us to exceed our goal of providing SCP for 10% of patients seen in 2015 prior to the conclusion of the third-quarter. By keeping the pilot small, we were able to pinpoint the “best practice” for identifying patients, completing the SCP, delivery of the SCP, and providing care in an efficient way. By creating SCP that can be adapted by the entire UTMC, CI, we were able to ensure that we are meeting all of our stakeholder’s needs. Conclusions: Compliance with Standard 3.3 for SCP does not have to be a daunting task. The process can be adapted to be efficient while utilizing already stressed financial and personnel resources. A successful survivorship program can be developed as a pilot prior to being adapted by an entire organization. We recommend identifying the appropriate stake holders, defining a physician champion, and identifying SCP that best serve the mission of each organization while meeting all regulatory requirements.
Survivorship model of care at a large National Cancer Institute.
Authors: Pabbathi Smitha , Morgan Mary Ann
Published: February 2017

37

Background: There is a lack of existing evidence on survivorship care models and their advantages and disadvantages when it comes to improving health outcomes. We describe the evolution of a Survivorship Care model at a large NCI designated Cancer Institute. Our model is closest to ASCO’s description of General Survivorship Clinic/Shared Care. The Clinic is led by a full time nurse practitioner and two part time internists. Initial start-up expenses were provided by Foundation funds Methods: Aggregate data was requested from Information Shared Services. Data was extracted from both Billing from Transmed-HRI and the Cancer Registry from the time period of May 2011 to August 2015 to identify patients who have been followed in the long-term Survivorship clinic. Results: Our program initially focused on breast and prostate cancer populations based on SEER data of cancer survivors and risk-stratification. Twelve other cancer types are now referred resulting in steady growth. A review of our patient population revealed 924 unique patients of which 619 were female and 305 male. Fifty-nine patients fell in the age range 20-44, 445 in the age range 45-65, and 420 > 65 age. Over fifty percent of our patients are from the Breast Program; the next largest population is Genito-Urinary and third largest group is Digestive. The patients racially identified as white are 89%, 6.3% black, 2.7% as other, 2% unknown. This is consistent with the center population. Eighty patients had recurrences or new primaries. Conclusions: The number of referrals has grown every year and the majority of patients continue to be followed annually. Patients do not feel lost in transition because we have a team based approach as the parent program exists within the institution. Our model not only allows our oncologists to focus on new patients and those with recurrent or metastatic disease but it can help bridge survivorship care from the oncologist to primary care physicians in the community. This type of clinic will also facilitate evaluation and treatment of late effects such as anthracyclines and pelvic radiation across diseases for management of symptoms.
Cancer survivorship care in the rural community: A mobile model.
Authors: Argenbright Keith Edward , Berry Emily , Mazour Tracy , Lawrence Stephanie L.
Published: February 2017

38

Background: As survival rates continue to improve, many forms of cancer are now regarded as chronic diseases requiring long-term follow-up. This survivorship phase of care represents a distinct opportunity to improve the health and quality of life for cancer survivors, addressing the lingering medical and psychosocial effects of illness, recurrent or new cancers, and promoting health behavior changes. Evidence-based cancer survivorship programs are typically limited in scope and only found in large cancer centers because they are costly and poorly reimbursed. As a result, UT Southwestern Moncrief Cancer Institute (UTSW-MCI) mobilized its clinic to provide essential survivorship services to the estimated 15,000 underserved cancer survivors in geographically remote areas of North Texas. Methods: UTSW-MCI provides survivorship care to Medicaid-enrolled and uninsured patients within a nine county service area using a custom-built mobile health unit. Staffed with an experienced team of nurses, social workers, dietitians, exercise specialists and physician assistant, services on the mobile clinic include: cancer screening and surveillance; medical management of long-term side effects of treatment; treatment summary and care plans; dietary evaluations and healthy lifestyle education; psychosocial evaluations, care coordination and navigation to financial assistance; and assessments for balance, immobility, range of motion, and safe physical activity. In-house providers with the ambulatory clinic are also able to see patients on the mobile unit using telemedicine. These services include genetic counseling, physician assistant evaluations, and psychological counseling. Results: After six months, mobile clinic enrollments represent more than 10% (N = 28) of the survivorship program patient population and nearly 15% (N = 130) of completed encounters, including 28 RN assessments, 26 Social Work evaluations, 21 Dietitian assessments, 53 Exercise sessions, and 3 PA consultations. Conclusions: This innovative survivorship care model addresses barriers that impede access to care to improve both the health of medically underserved cancer survivors and the experience of care while reducing the cost of care without compromising quality.
SEASONS: A prospective study assessing the physical, psychosocial, spiritual, and financial needs of patients with breast and prostate cancer.
Authors: Ehmke Nancy Jean , Biddle Hilary , Hunnicutt Breck Ann , Trenkner Stephanie
Published: February 2017

4

Background: Three distinct phases or "seasons" of survival have been described by Mulan (1985) including: acute (time of diagnosis to treatment), extended (intermittent treatment to surveillance), permanent (likelihood of recurrence diminishes). Each season is associated with unique physical, psychosocial, spiritual, financial, and educational needs. ASCO has identified education for survivors and their families as essential in achieving high-quality cancer survivorship care. As cancer centers expand survivorship services beyond the first tier (delivery of care plan) to provide educational programs and support services, it is critical to assess survivors' needs throughout their journey. The purpose of this prospective study is to identify the follow-up preferences and the educational, physical, psychosocial, financial, and spiritual needs of breast and prostate cancer survivors during the seasons of survival. Methods: Breast and prostate cancer patients completed the Pearlman-Mayo Survey at the start of treatment(T1), 4-6 weeks (T2)and 8-16 months(T3)after treatment then annually for four years(T4,T5,T6,T7). A series of paired t-tests determined if differences in needs existed between the various time periods. In addition, the Cronback alpha reliability estimation tool was used. Results: A total of 203 survivors were enrolled. 74 surveys were completed between T1 and T2. First Interim results revealed fatigue, nutrition, and sexual issues were of concern. Identified concerns at T3(n = 83) include fatigue, insomnia, hot flashes, and management of household activities. Depression decreased from T1 to T2 but increased at T3.Although decreased libido was reported at T1, more than 60% of respondents were concerned at T3.Respondants indicated a preference to be followed by nurse practitioner. Conclusions: As planning for the second tier of survivorship care begins at Parkview Comprehensive Cancer, educational and supportive programs on fatigue, nutrition, depression and sexuality will be implemented. Data collection and analysis will continue until participants have been followed for four years.
The University of Pittsburgh CancerCenter Primary Care Provider Workforce Integration Initiative: An institutional model—Design, process, status, and implications.
Authors: Van Londen G J. , Weiskopf Brufsky Jill , Parker Ira Russell
Published: February 2017

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Background: Due to increasing numbers of individuals diagnosed with cancer, a burgeoning cohort of cancer survivors with significant medical co-morbidities, and oncology workforce “supply-demand” challenges, the optimal integration of Primary Care Providers (PCPs) into the comprehensive cancer care paradigm is of timely importance. The objective is to describe those specific planning and implementation issues impacting the establishment of a cancer care delivery model targeting the interface between Oncology and Primary Care. Methods: The University of Pittsburgh CancerCenter PCP Workforce Integration Initiative received authorization to proceed in December of 2014. Immediate actions were then undertaken: 1) Establishment of an “Advisory/Working Group” [Fifteen stakeholders representing the interests of Oncology, Patient Advocacy, Nursing, Primary Care (Family Medicine, Geriatric Medicine, Internal Medicine, and Gynecology); Administration, Information Technology, and Research]; 2) Conduct of focus groups and individual, fact-finding conversations; 3) Programmatic planning of a “pilot” intervention; and 4) Planning of a full-day, continuing medical/nursing education symposium focusing upon the specific training and empowerment needs of PCPs with regard to their evolving roles in the comprehensive cancer care paradigm (November/2015). Results: Focus groups demonstrated an overall acknowledgement of the importance of the issue and a willingness to participate. Specific identification of those unique provider roles and competencies necessary to address a patient’s individual “survivorship” risk profile and the development of a system to best enhance communication and information exchange among the providers and patients were made evident. The results of a survey (knowledge, attitudes, beliefs, and practices) conducted to the attendees of the Symposium will be discussed. Conclusions: To best optimize the interface between Oncologists and PCPs with regard to best practices cancer care, well-planned competency training and “system development” will be necessary.
Building an oncology community of practice.
Authors: Willis Anne , Loeffler Deena R. , Pratt-Chapman Mandi
Published: February 2017

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Background: Oncology patient-centered outcomes research (PCOR) helps stakeholders, including patients, clinicians and policymakers, make decisions about care; yet, research findings may take years to be put into practice. With the increasing availability of survivorship PCOR, better methods are needed to disseminate and implement findings quickly and effectively. Engaging multiple stakeholders is essential to meet this need, and Communities of Practice (CoP) are effective in increasing collaboration across organizations and stakeholders. Methods: The George Washington University (GW) Cancer Institute created a CoP as a knowledge management approach to break down professional and organizational barriers, support learning for people new to the field and facilitate collaboration within and across organizations. The goal of the CoP is to create stronger links across researchers, healthcare professionals and patients by facilitating the sharing of survivorship information and resources. These linkages will result in enhanced dissemination of evidence-based practices. Results: The CoP is housed within the Generation and Translation of Evidence (GATE) website. The site features user-generated content, including descriptions of research findings and evidence-based interventions to succinctly provide information for a variety of stakeholders to guide decision-making as well as descriptions of best practices and lessons learned to capture practice-based efforts that can drive research. GATE features a question-and-answer bank with evidence-based responses by survivorship experts. The CoP includes Ask the Expert sessions to provide researchers an opportunity to interact with clinicians and patients to guide research dissemination. It also includes Special Interest Groups for researchers to create collaborations and advance research agendas. An e-newsletter highlights new GATE content and opportunities to collaborate. Conclusions: There is a clear need to better disseminate and implement survivorship PCOR evidence to improve cancer care delivery. The GATE website will aid in more rapid implementation of survivorship PCOR evidence into clinical practice and foster collaborative dissemination and implementation efforts.
Survey of cancer survivors' understanding of their cancer care and follow-up plan.
Authors: Imran Farhan Shahzad , Andrews Caroline , Doerner Kathy , Heatherington Brittany , Hodes Susan , Pictor Nancy Mary , Reda-Cheplowtiz Cathy , Santelli Jeanine S , Jamshed Saad
Published: February 2017

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Background: The follow up care for cancer survivors is often sidelined due to the lack of well-defined guidelines. A “Survivorship care plan (SCP)” has been proposed to summarize key aspects of the cancer care and the future follow-up plan. Cancer survivors who had not received SCP were surveyed to gauge their understanding of their cancer care. Methods: Patients who had completed cancer therapy with curative intent during a 2 year period (2013-2014) were mailed the survey questionnaire. This questionnaire was designed to test understanding of their diagnosis (stage), care team, symptoms of relapse, surveillance plan, and short and long term side effects of their treatment. The Cancer Center’s medical record database was systematically searched to identify subjects. Microsoft Excel was used to calculate descriptive statistics on the quantitative data and frequency counts for the qualitative data. Results: 161 cancer survivors completed the survey of the total 342 mailed. The majority of these patients had breast (92%) cancer. Other cancer survivors had a diagnosis of lung (6%) and colon (2%) cancer. Only 2% patients did not know their cancer diagnosis. 12% patients did not know the stage of their cancer. 98% patients were able to report their surgeons’ name, however 85% and 89% could not recall their medical and radiation oncologist, respectively. 95% patients recalled discussing their follow-up plan with their provider but only 86% patients knew which test(s) should be performed as part of their cancer surveillance. Only 68% patients accurately listed a few symptoms suggesting cancer recurrence, while 62% survivors correctly listed a few potential long term side-effects of cancer treatment. Conclusions: There are several deficiencies in survivors’ understanding of their cancer care. Further research is needed to assess and compare if these deficits can be improved by a SCP document.