bluuebunny/crossref_metadata_2025 huggingface dataset:
Oncofertility and quality of life among adolescent and young adult survivors of childhood cancer.
Authors: Tercyak Kenneth , Mays Darren , Johnson Andrea , Murphy Sarah , Shad Aziza T.
Published: February 2017

222

Background: Although infertility risks due to childhood cancer treatment are well-documented, research on the psychosocial impact of treatment-associated infertility risks among adolescent and young adult (AYA) cancer survivors is limited. This study examined AYA pediatric cancer survivors’ perceptions of oncofertility and cancer treatment-associated infertility risks and associations with patient-reported quality of life (QoL). Methods: Patients ages 12 to 25 (n= 70, M age 19.4, 74% white, 57% female, a majority leukemia/lymphoma survivors) were recruited from a pediatric hematology/oncology clinic and local pediatric cancer survivor support organizations. Patients reported knowledge and beliefs about treatment-related fertility risks and reproductive health, and oncofertility information and support needs, and completed the Pediatric Oncology Quality of Life (QoL) scale. Results: Patients’ knowledge about infertility risks and fertility preservation options was low (M 13.5, SD 8.6, range 0-42): patients’ attitudes indicated treatment-related infertility risks was important (M 21.7, SD 7.0, range 0-40), they perceived they were at-risk for infertility (M 3.8, SD 1.0 range 1-5), and expressed unmet needs for supportive resources on reproductive health (M 13.6, SD 4.8, range 1-24). Greater perceived risks of infertility (r = .34, p = .004) and importance of fertility risks (r = .34, p = .004) were associated with lower QoL. In a multivariable model adjusting for patient age and gender, beliefs that reproductive health was important was associated with lower QoL (B = .68, p = .041). Conclusions: Population data demonstrate few AYA cancer survivors have opportunities to discuss fertility preservation with providers. Our findings indicate AYA cancer survivors perceive treatment-related infertility risks as important, associated with QoL, and with needs for more information about reproductive health and fertility preservation. Care models addressing AYA survivors’ infertility risks are needed as part of the diagnosis, treatment, and long-term follow-up of these patients.
Engaging a statewide network to expand survivorship care to rural and urban cancer survivors.
Authors: Klemp Jennifer R. , Bush Carol , Spaulding Ashley , Krebill Hope , Doolittle Gary C.
Published: February 2017

23

Background: Advances have been made in elevating cancer survivorship as a public health priority and defining elements needed to deliver high-quality follow-up care to survivors. However, a lack of research on how best to care for survivors and the most effective and efficient strategies for delivering survivorship care in the community setting still exists. We report our assessment of the current state of practice, knowledge and professional development, and plan to increase access to care of urban and rural practices across the state of Kansas. Methods: In 2014, the Midwest Cancer Alliance (MCA), a membership-based outreach arm of The University of Kansas Cancer Center, convened an educational summit and survey to assess the survivorship landscape in Kansas. Post-summit, individual interviews were conducted. Survey and interviews included questions regarding health records, treatment summaries, survivorship care plans (SCP), availability of survivorship programs and resources, access to primary care and specialists, distress screening, community support, and educational needs. Results: Ten MCA member health systems were invited to participate and 7 indicated interest in participating in the project. Only one organization provided an SCP to survivors. Barriers included lack of an integrated approach and knowledge. A majority of survivorship care could be delivered close to home, however, services including fertility preservation, genetic counseling, oncology rehab, sexual health, and second opinions, required travel of more than 50 miles. Identified educational needs focused on comprehensive survivorship care across the health care team. Conclusions: Survivorship care remains fragmented across the state of Kansas. Based on this project, we have secured a CDC survivorship grant that will facilitate clinical and technical assistance related to process improvement and electronic health record integration focused on survivorship care and delivery of an SCP. Next steps include engaging primary care providers and survivors to assure the SCP meets the needs of stakeholders. This work will focus on a translational process to meet the growing needs of the survivors and complex health care organizations.
Discrimination and quality of life among breast cancer survivors.
Authors: Gomez Scarlett Lin , Gonzales Felisa A , Shariff-Marco Salma , Dwyer Laura A , Nuru-Jeter Amani
Published: February 2017

250

Background: We examined the role of race/ethnicity, education, and medical discrimination on global and breast cancer-specific (BCS) quality of life (QoL). Methods: Telephone interviews were administered to 536 Asian, Black, Hispanic and White women identified through the Greater Bay Area Cancer Registry who were aged 20+ when diagnosed with a first invasive primary breast cancer between 2006 and 2009. Women reported perceptions of discriminatory experiences while receiving breast cancer care. QoL was assessed with a single item asking about global QoL over the past 4 weeks ( “excellent” vs “less than excellent”) and a summary score for the 6-item breast cancer subscale of the FACT-B (higher scores indicated more concerns (or worse QoL)). Race/ethnicity and education were combined into an 8-category variable (4 race/ethnic groups x 2 education groups). Psychometric analyses was used to create a summed medical discrimination score using 7 items that comprised a single factor, and split into tertiles to indicate no, low, and moderate/high levels of discrimination. Main effects for race/ethnicity x education and medical discrimination were identified using logistic and linear regression models. Adjusted analyses controlled for age, marital status, health insurance, stage, histology, and tumor size. Results: In adjusted analyses, disparities across combined race/ethnicity x education groups were observed for global QoL (Wald χ2(7) = 23.32, p < 0.01) but not for BCS QoL (F= 0.78, p= 0.60). Black and Asian women reported lower global QoL than college-educated White women. Medical discrimination was related to global (Wald χ2(2) = 6.98, p= 0.03) and BCS QoL (F= 6.14, p< 0.01). Women reporting moderate/high levels of medical discrimination had significantly lower odds of excellent QoL (OR= 0.416, p< 0.01) and more breast cancer concerns (β= 1.19, t= 3.50, p< 0.001) than women reporting no discrimination. Conclusions: Medical discrimination was associated with lower global and BCS QoL. More research is needed to identify specific factors at the individual, provider, and organizational levels that contribute to perceptions of medical discrimination so that they can be addressed and QoL can be improved for breast cancer patients.
Integrating health insurance assessments into oncology care.
Authors: Morales Joanna , Bryant Monica
Published: February 2017

253

Background: Nearly 10% of the U.S. population lacks health insurance coverage. Healthcare professionals are often asked by their patients about health insurance options. The Patient Protection and Affordable Care Act (ACA) has brought new health care options and consumer protections for people coping with cancer. Unfortunately, there is a plethora of misinformation about these changes. Healthcare professionals are uniquely positioned to provide patients with accurate, quality information, improving patient quality of life. Methods: The presentation will cover the implementation of the ACA at the federal and state levels and the impact of the ACA on the cancer community. Attendees will learn about new consumer protections and health insurance options, and receive concrete tools to conduct clinical assessments that address access to health insurance coverage and the subsequent impact on psychosocial needs. Results: Our surveys have found that 75% of oncology healthcare professional respondents were asked for guidance on how healthcare reform might affect their patients. However, only 7% of those surveyed felt “very comfortable” answering questions about the ACA. Therefore, there is an obvious gap between the knowledge level of healthcare professionals and what they are being asked by their patients. Oncology healthcare provider attendees will gain a better understanding of health insurance options available to their patients. Attendees will receive practical tools to answer questions and provide appropriate resources, thereby alleviating anxiety, and improving quality of life for patients. Conclusions: In order to effectively navigate patients through the cancer care continuum, oncology healthcare providers must be armed with up-to-date knowledge about health insurance options and protections, and given concrete tools for conducting clinical assessments that address a broad spectrum of psychosocial needs.
Development of second primary cancers in breast cancer survivors.
Authors: Jung Hong Kyu , Lee Jihyoun , Kim Zisun , Lee Min Hyuk , Lee Ilkyun
Published: February 2017

257

Background: Breast cancer survivors have slightly increased risk of second primary cancers. Importance of screening for second cancers has been raised due to increased survival in those populations. Not only having genetic risk such as BRCA mutation, but also treatment-related risk presents. The most common second primary cancer is breast cancer. Colon cancer, uterine cancer, and ovarian cancer showed increased cumulative incidence. In this study, we assessed development second primary cancers in breast cancer survivors. Methods: Medical record of breast cancer patients was reviewed retrospectively in three tertiary medical institutions. Available data of ICD-9 record after breast cancer diagnosis was evaluated. Diagnosis of second primary breast cancer was excluded in evaluation. Results: Since Jan 1989 to Jan 2014, available medical records were reviewed in breast cancer patients(N = 5880) in three institutions(one urban and the other two rural institutions). Cumulative incidence of overall second primary cancers was 4.57%. Among 269 second primary cancers, thyroid cancer(44.2%) was most common second primary cancer, followed by gastric cancer(10.0%). Gastric cancers were more common in rural institution than urban area(14.2 % vs 5.5%), while incidence of thyroid cancer is elevated in urban institution(57.8% vs 31.9%). Among 9 patients who has been diagnosed endometrial cancer, 7 patients had history of selective estrogen receptor modulator(tamoxifen or toremifen) treatment. Development of lung cancer was not related to breast cancer radiation treatment(4 of 15 patients). Leukemia after breast cancer treatment was diagnosed in 5 patients (8.5% of second primary cancers), three of them were adult T cell leukemia and two of them were acute myeloid leukemia. Conclusions: Incidence of cancer in general population was reflected to development of second primary cancer in breast cancer survivors. Endocrine treatment was related increased incidence of endometrial cancer, respectively. Application of personalized cancer screening plan would be important in this patient group.
Use of telemedicine to expand access to survivorship care.
Authors: Cole-Vadjic Kelli Kristine , Crews Jennie Robertson
Published: February 2017

26

Background: PeaceHealth St Joseph Cancer Center (PHSJCC) provides medical and radiation oncology services in northwest Washington. PeaceIsland Medical Center (PIMC) is an affiliated medical center that provides medical oncology services in the nearby San Juan islands. Survivorship appointments for Survivorship Care Plan (SCP) delivery are available at PHSJCC but have not been available at PIMC. Telemedicine services were previously established for medical oncology appointments for patients at PIMC with a provider at PHSJCC. Methods: Since January of 2015, patients who are eligible for survivorship services are identified by their medical oncologist or nurse upon completion of chemotherapy at PIMC. They are scheduled for a 1 hour survivorship telemedicine appointment with the survivorship physician assistant (PA). The patients attend the appointment at PIMC with a nurse present there to assist with logistics and deliver survivorship appointment materials. The PA is at PHSJCC and conducts the appointment through visual and audio telemedicine equipment. During the telemedicine appointment the SCP is reviewed and delivered, educational materials are provided and discussed, and referrals are initiated as needed based on a standardized patient distress screening questionnaire. Patients who complete radiation therapy at PHSJCC but live in the San Juan islands are now also being identified and scheduled for survivorship telemedicine appointments at PIMC. Results: Patients who live in a small island community where survivorship services were not available are now able to receive a survivorship appointment with SCP delivery through telemedicine. Between January and July of 2015, 6 patients were identified for survivorship appointment eligibility upon completion of chemotherapy at PIMC. 3 of these patients have completed a survivorship telemedicine appointment, 2 are currently scheduled, and 1 declined to schedule. Although qualitative surveys have not yet been conducted, the patients who completed survivorship telemedicine appointments offered generally positive feedback about the experience. Conclusions: Telemedicine is an effective way to deliver SCPs in geographic areas where patients do not otherwise have access to survivorship care.
Factors affecting survival in women with ductal carcinoma in situ (DCIS): Race and the delivery of adjuvant radiotherapy.
Authors: Arrojo Elisabeth E. , Martinez Alvaro , Fernandez Eduardo , Forman Jeffrey D. , Ghilezan Michael , Vicini Frank A.
Published: February 2017

29

Background: Recent publications questioned the survival impact of adjuvant radiotherapy (A-RT) in the treatment of DCIS. These reports had in common a short follow up. We wanted to know, in a disease where long term follow up is required, the magnitude of improvement in survival and assess any correlation with race and income. Methods: Search in the Surveillance, Epidemiology and End Results database, of patients diagnosed with DCIS between 1988 and 2012, younger than 70 years old. Analyses of age, race, hormonal receptors (HR), tumor size, surgery, ART and household income. Survival analyses with Kaplan-Meier and multifactorial with Cox proportional-hazard regression. Results: 125,805 patients. Mean follow-up 7.9 years. Patients treated with A-RT resulted in a mortality by breast cancer (DBC) significantly lower (-1.10%; HR: 0.54 [IC95%:0.48-0.59]; p < 0.0001). Based on the type of surgery, mastectomy resulted on a DBC significantly higher than those treated with tumorectomy and A-RT (+1.15%; HR: 2.08 [IC95%:1.84-2.36]; p < 0.0001). Patients with HR+ presented a significantly lower DBC. Black race was the one with the lowest household income (43% < 53900$) opposite to the Asian which was the one with the highest (47% > 71520$). Black race, also presented a DBC significantly higher than the other ones. In the multifactorial analyses (see table), the only variables which presented a significantly influence in DBC were -ART (it decreases DBC) and race (black race increases DBC). Conclusions: These results show blacks, which are the ones with lowest household income, have a significantly increase in cancer mortality than the other races, and that A-RT cuts mortality rates quite drastically in women with DCIS. [Table: see text]
Prevalence of low bone mass and osteoporosis in patients with cancer: Program for healthy aging.
Authors: Edwards Beatrice Jara-Almonte , Sun Ming , Holmes Holly Michelle , Valladarez Heather , Nguyen Vu , Khalil Peter , Song Juhee
Published: February 2017

30

Background: Older adults, 65 years of age and older, with cancer may be at higher risk for low bone mass or osteoporosis, however, the exact magnitude of this condition is unknown. It is postulated that the etiology of low bone mass and osteoporosis in cancer may be a combination of age-related and cancer therapy related bone loss. Methods: We conducted a retrospective cohort analysis, of older adult cancer patients evaluated at the Program for Healthy Aging at MD Anderson from January 1, 2013 through March 31, 2015. Bone mineral density (BMD) was assessed with a Hologic W densitometer, with a CV% of 1%. Information on prior fractures and falls were also collected. Results: One hundred and nine patients with Bone density tests were included in the analysis, with males (n = 57) constituting 52% of cases, the mean age was 77 years, range 65 – 93 years. Race: white (n = 79, 74.5%), African- American (n = 23, 21.2%), Asian (n = 4, 3.8%). Ethnicity: Latino (n = 8, 11.4%). Cases included hematologic cancers (n = 41, 37.6%), breast cancer (n = 19, 17.4%), prostate cancer (n = 15, 13.8%), gastrointestinal cancers (n = 10, 9.2%), and bladder and lung cancer each (n = 6, 5.5%). Low bone mass and osteoporosis was identified in 87 cases (80%). Only 26 cases reported falls in the preceding 6 months, while 11 cases had a prior fracture after the age of 50 years. Additional risk factors for falls and fractures included cognitive impairment, malnutrition, and polypharmacy. Conclusions: Low bone mass and osteoporosis are highly prevalent conditions in older patients with hematologic and solid malignancies. A greater awareness of such, should allow for effective interventions in order to prevent fractures and their negative impact on quality of life.
Successful implementation of a disease-specific survivorship program for men with prostate cancer (PC) and their partners.
Authors: Higano Celestia S. , Pollock Phil , Wassersug Richard J , Zarowski Christine , Dayan Marcy , Weller Sarah , Van Patten Cheri , Elliott Stacy , Sundar Monita , Mahovlich Sarah , Wibowo Erik , Gleave Martin , Black Peter C. , So Alan , Goldenberg Larry
Published: February 2017

31

Background: Treatment for localized PC can adversely impact the quality of life for the patient (pts) and his partner. Addition of androgen deprivation therapy (ADT) to treat biochemical relapse or metastatic disease can result in further symptoms. We hypothesized that PC pts and partners would benefit from a clinical, educational, research-based approach to care that would focus on their specific needs. Methods: Funding from government agencies and philanthropic sources were used to establish a survivorship program in the urology clinic at the Vancouver Prostate Centre. A multi-disciplinary management team was formed to oversee the program. The Prostate Cancer Supportive Care (PCSC) Program is organized around 5 thematic modules 1) information about PC and primary treatment options (TX), 2) sexual health and intimacy (SH), 3) lifestyle changes in diet and exercise (DE), 4) managing the side effects of ADT, 5) incontinence and pelvic floor physiotherapy (PT). Group educational sessions (ED) are held 1-2 times monthly. Individual clinic appointments with SH and PT clinicians are also available. A program manager, clinic coordinator, and research assistant run PCSC on a day-to-day basis. Results: PCSC was initiated in January 2013. Urologists, nurses, pharmacists, and radiation oncologists referred patients to PCSC. Of 802 pts who enrolled (167 in 2013, 369 in 2014, and 266 in 2015 to date), to receive the quarterly newsletter, 626 (78%) chose to actively participate in at least one module (summarized in table). Feedback from couples, participating clinicians, and allied health personnel has been overwhelmingly positive. In addition, the PCSC population is proving to be a rich source of patients for research projects and training opportunities for young MDs. Conclusions: The results demonstrate that implementation of a disease specific survivorship program is feasible, well received and has other unanticipated benefits. Outcomes research and intervention protocols are in progress to address our hypothesis. [Table: see text]
Completeness and accuracy of survivorship care plans (SCPs) prepared via two methods: Electronic health record (EHR) auto-population versus manual data entry.
Authors: Tevaarwerk Amye , Zeal Jamie L , Gribble Mindy , Buhr Kevin A , Wiegmann Douglas , Koehn Tamara , Sesto Mary E , Hocking William Gray
Published: February 2017

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Background: To improve care for side effects and coordinate follow up, SCPs should correctly and thoroughly report details regarding diagnosis and treatment. However, literature is lacking regarding SCP accuracy and completeness. We audited SCPs for errors and omissions, as part of a clinical trial conducted at two cancer centers. Methods: SCPs were prepared for Stage 0-3 breast cancer patients by 1 of 2 methods, which was based on the standard of care at each center: 1) EHR-based: auto-populated using data entered into the EHR by oncologists for clinical use. SCP finalized by oncologist or advanced practice provider; and 2) Manual entry: prepared by an RN using manual transfer of clinical data into software program. Each participant’s clinical data was abstracted from her chart, with audit and cross-check against each SCP. In the case of discrepancies, oncologists reviewed the chart and adjudicated the “correct” information, as well as completeness and error. Omissions were defined by missing SCP information required per IOM recommendations; errors were defined as data reported in the SCP that did not match the chart. Results: Two sites enrolled 128 women between 11/2013-12/2014; 80 received EHR-based vs 41 manual SCPs. Omissions: 24 (30%) EHR-based versus 6 (15%) manual SCPs contained at least 1 omission. Omissions included failure to provide some dates and specific axillary surgery type (sentinel vs axillary) for EHR-based SCPs and failure to specify receptors for manual SCPs. Errors: 7 (9%) EHR-based versus 19 (46%) manual SCPs contained at least one error. The majority of EHR-based SCP errors were minor discrepancies in dates. Errors in manual SCPs included chemotherapy regimen, incorrect receptors, incorrect stage and axillary surgeries; stage and surgery errors were affected by poor fit with templated SCP fields. Conclusions: Little is known about SCP accuracy and completeness. Manually prepared SCPs may have a higher rate of errors while EHR-based SCPs may have more omissions. Differences in preparation (site, training of preparer) could also account for these differences. In an era of required SCP provision, measures of SCP quality should be considered.
Impact of lymphoma survivorship clinic visit on patient-centered outcomes.
Authors: Thompson Carrie A. , Towns Jessica N , Dripps Laurie , Jenkins Sarah , Lackore Kandace , Yost Kathleen J. , Ristow Kay , Colgan Joseph , Habermann Thomas Matthew , Inwards David James , Johnston Patrick B. , Klebig Robin , Lin Yi , Markovic Svetomir , Micallef Ivana N. M. , Nowakowski Grzegorz S. , Porrata Luis F. , Rosenthal Allison Claire , Witzig Thomas E. , Ansell Stephen Maxted
Published: February 2017

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Background: The goals of our Lymphoma Survivorship Clinic (SC) are to coordinate care, educate patients, and create a survivorship care plan (SCP). The aim of this study was to determine if patient-centered outcomes are improved after a SC visit. Methods: From 11/13-5/15, surveys were mailed to recently-treated lymphoma patients who were within 4 weeks of their last visit and in remission. Quality of life (QOL) was measured with PROMIS and distress was measured with the Impact of Events scale. Responses between those who attended SC and those who were eligible but did not attend were analyzed. Results: There were 96 surveys sent to the SC group; 59 were returned (61% response rate). Of the non-SC group, 140 surveys were sent and 84 were returned (60% response rate). Mean age was 57 years (range 23-77) in the SC group and 59 years (23-88) in the non-SC group. There were more females in the SC group (52% vs 30%) but no differences in race, marital status, education, or health literacy. Those who attended the SC were more likely to recall receiving a summary of cancer treatment and recommendations for follow-up care (90% SC vs. 75% non-SC, p = 0.03). Furthermore, SC attendees were more likely to “definitely” recall discussion on improving health or preventing illness (89% vs. 53%), getting help in making changes in habits/lifestyle (76% vs. 50%), diet (80% vs. 31%), and exercise (82% vs. 51%), all p < 0.001. There were no differences in discussions regarding smoking, follow-up testing, and symptom monitoring. The SC group was less likely to need more information regarding sexuality (6% vs 20%, p = 0.045). There were no differences in need for information regarding anxiety, fitness, familial cancer risk, fertility, complementary therapies, and social issues. The SC group was slightly more confident that they could get information or advice related to cancer (completely confident 76% vs. 61%, p = 0.07). There were no differences in QOL or distress. Conclusions: A Lymphoma SC visit increased receipt of SCP and provided more information on survivorship issues, particularly health behaviors, but did not improve QOL or distress. Further study is needed to determine if this leads to long-term health benefits.
Implementing provider and patient initiated survivorship care planning: Lessons from baseline.
Authors: Smith Katherine Clegg , Greco Stephen C , Hannum Susan , Radhakrishnan Archana , Smith Karen L. , Tolbert Elliott , Snyder Claire Frances
Published: February 2017

65

Background: It is recommended that cancer patients completing treatment receive a Survivorship Care Plan (SCP). Most SCP templates are designed for provider initiation and completion. Barriers to SCP provision include time and resource restrictions in the oncology clinic. Patient-initiated SCPs are one alternative. We conducted a pilot trial describing and comparing implementation of a provider-initiated versus patient-initiated tool. We present clinician and patient baseline data. Methods: We recruited oncologists from two community-based academically affiliated hospitals and conducted qualitative interviews exploring perceptions of patients’ needs and SCP value. To determine feasibility of oncologists identifying patients for an SCP, participating oncologists were to refer adult patients completing active treatment for non-metastatic cancer to the study team. Enrolled patients completed the Cancer Survivors’ Unmet Needs (CaSUN) and Preparing for Life as a New Survivor (PLANS) surveys. Results: Of 58 invited clinicians, 13 agreed to participate, 5 referred patients. Participating clinicians were not currently providing SCPs. Opinions were mixed about SCP value for improving care; most saw value for communication and care coordination. The study team worked with nurses to identify eligible patients, given challenges with identification as part of routine practice. We recruited 41 patients (aged 44-90 years, 68% female, 81% White, 53% reporting excellent or very good health) from 71 approached. At baseline, patients reported an average of 13.8 informational and support needs; 9.3 of which were met and 4.5 were unmet. The most common unmet needs were recurrence concerns (37%), case management to identify services (30%), adjusting to changes in quality of life (22%), and coordination among providers (21%). In terms of understanding follow-up care, 24% reported not feeling prepared for what to expect and not knowing about follow-up tests; 22% reported providers not communicating well with each other. Conclusions: Need exists for robust systems to identify eligible patients. Enrolled patients’ needs were relatively modest, with recurrence concerns and inter-professional coordination being key. Clinical trial information: NCT02405819.
Comparing overall survival (OS) outcomes in patients with newly diagnosed chronic lymphocytic leukemia (CLL) with normal life expectancy.
Authors: Furman Richard R. , Allan John N , Howes Angela J. , Mahler Michelle , Wildgust Mark A.
Published: February 2017

7

Background: CLL is an orphan hematologic malignancy but also accounts for the most common adult leukemia in the Western Hemisphere, with a median age at diagnosis of 72 years. Median OS for symptomatic, treatment-naïve, elderly patients with CLL is approximately 5.3 years (CLL5; Eichhorst, et al. Blood 2009), whereas the life expectancy of a 72 year old (yo) is around 12 years (US Life Tables, 2006). Ibrutinib, an oral, first-in-class, covalent Bruton’s tyrosine kinase inhibitor, significantly improves OS. Early results from a phase 1/2 study in treatment-naïve elderly patients with CLL (PCYC-1102; median age, 71 years) suggest that single-agent ibrutinib extends OS, with survival at 3 years of approximately 97% (Byrd, et al. Blood 2015). Here we compare the OS in newly diagnosed patients with CLL treated with single-agent ibrutinib or chlorambucil with the normal life expectancy of a 72 yo adult. Methods: OS outcomes for patients treated with chlorambucil from the CLL5 study conducted in Germany (Eichhorst, et al. Blood 2009) were compared with long-term OS results from PCYC-1102 (Byrd, et al. Blood 2015). Life expectancy data were obtained from US Life Tables. Results: Results from CLL5 suggest that single-agent chlorambucil has a median OS of 5.3 years (median age, 71 years), with approximately 75% of patients alive at 3 years. The median OS for ibrutinib has not been reached (median follow-up, 3 years), with an estimated progression-free survival of 96% and OS of 97% at 3 years. Life expectancy for a 72 yo healthy person at 3 years is approximately 95%. Naïve comparisons suggest that single-agent ibrutinib may be altering the natural history of CLL, providing a longer OS versus chlorambucil and a similar OS as expected in a 72 yo in the general population. Conclusions: Treatment outcomes in CLL are fundamentally changing with the advent of new targeted therapies. This indirect naïve comparison between ibrutinib-treated patients and a general population suggests we may be moving from palliative care for elderly patients with CLL to chronic care management. Implications for chronic care management of patients with CLL will be discussed.
Evaluating a clinically and culturally informed survivorship care plan trial for African American breast cancer survivors (AABCS).
Authors: Ashing Kimlin Tan , McDowell Kommah , Brown Shirley , Serrano Mayra , Lai Lily L. , Miller Aria
Published: February 2017

71

Background: This randomized control study was designed to evaluate the impact of trial participation on access to survivorship care planning (SCP) and adherence to surveillance recommendations among AABCS. Methods: AABCS were recruited from the State Cancer Registry and support groups. This trial consisted of 1:1 randomization into two conditions: 1) peer navigation + clinically- and culturally-informed breast cancer (BC) materials, and 2) clinically- and culturally-informed BC materials, only. AABCS (N= 29) from advocacy groups were trained as peer navigators, with on-going supervision and monitoring by the research team. The ASCO-SCP template was modified based on input from survivor-advocates to increase clinical, cultural and socio-ecological relevance. The study was implemented using community based-participatory approach. Mailed, self-report assessments were taken at baseline and at 6- and 12-month follow-up. Results: In total, 112 AABCS who were 6-18 months post initial primary treatment for stage 0-3 BC participated in the study. There was a 74% participation rate and a 64% completion rate. At 6- and 12-month follow-up, 65% and 73% reported access to a SCP, respectively. Improvements from baseline in adherence to SCP surveillance recommendations were observed at 6- and 12- month follow-up assessments regarding physical exam (45.6%, 71.2%, 71.0%, respectively), pelvic exam (39.7%, 45.2%, 46.5%, respectively), breast self-exam (45.0%, 79.0%, 81.2%, respectively), and breast imaging (31.1%, 75.6%, 81.1%, respectively) (p< 0.05). There we no significant demographic, medical or study outcome differences by study condition. Conclusions: Our study findings demonstrate the effectiveness of trial participation in facilitating access to SCP and improved adherence to recommended surveillance. Participation of survivor-advocates in developing culturally-informed BC informational and survivorship care strategies can enhance acceptability and sustainability, especially in community and primary care settings. Untapped opportunities exist for survivor-advocate engagement in survivorship research and practice to address inequities. Clinical trial information: NCT01824745.
Measuring impact of survivorship care plans on head and neck cancer patients.
Authors: Harr Bridgett Ann , Bodmann Joanna , Koyfman Shlomo A. , Nwizu Tobenna Igweonu , Joshi Nikhil Purushottam , Ives Denise I. , Rahe Melissa L , Hamker Jean F , Adelstein David J.
Published: February 2017

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Background: At our institution, patients who have completed treatment for a locoregionally confined head and neck cancer are followed in a multidisciplinary head and neck survivorship clinic initiated by the administration of a formal, patient specific survivorship care plan (SCP). We sought to assess the impact of these SCP visits on patient understanding of their disease, its treatment, and potential late effects and follow up plans. Methods: An IRB approved survey was administered by an uninvolved third party, to an unselected sequential series of head and neck cancer survivorship patients at the time of a regularly scheduled follow up visit. The survey focused on the knowledge recalled from the SCP, and whether this changed over time. We analyzed two cohorts of patients, based on whether the SCP had been given to them within the last 18 months or not. Results: Preliminary results from the first 20 patients surveyed are presented. These patients received their SCP 3-27 months before being surveyed. Primary tumor sites included oropharynx (16) and larynx (4) and most patients had been treated with intensity modulated radiation therapy (19) and concurrent cisplatin (11). Conclusions: Although patients’ recall about receiving a formal SCP appeared to diminish over time, the information provided by this SCP plan and subsequent survivorship visits was retained. Whether this reflected the SCP itself, or the reinforcement of continued close follow up survivorship visits cannot be determined, but merits further investigation. [Table: see text]
The Quality of Survival (QoS): A concept framework to assist communication and decision making about cancer care.
Authors: Fallowfield Lesley , Nadler Eric , Greaney Maire , Gater Adam , Subar Milayna , Orsini Lucinda Strycker , Lyman Gary H.
Published: February 2017

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Background: The past decade has seen the development of transitional, novel cancer therapies that lengthen survival, yet data regarding the quality of that survival are limited or unavailable. Improving patient (pt)/healthcare professional (HCP) communication about issues such as QoS might enhance engagement and inform decision-making about future care. For example, the PROACT study (ECC 2015, abs.1715) has shown how little attention is given to family caregiver impact. Our objective is to develop an inclusive framework that will go beyond existing pt-reported outcomes and quality of life (QoL) constructs, and which HCPs may use to communicate with pts. Methods: An electronic database search to investigate the QoS landscape in cancer was conducted and results were articulated into a visual concept map. Subsequently, 20 US pts with metastatic NSCLC were interviewed about their cancer experiences (a similar melanoma pt survey is ongoing) and this input was integrated into the concept map. Areas explored include: symptoms, disease/treatment communication and education, pt expectations about treatment goals and involvement in decision-making, and impacts of all these on pts, families, and friends. Results: In their interviews, pts reported a host of impacts: physical, psychological/emotional, social/relationship, work, and financial. A QoS concept framework was developed to capture the holistic pt experience throughout the continuum of cancer care (during and post treatment) and consisted of 4 interconnected domains: QoL, survival, side effects and economic impact. The severity and persistence of some of the impacts ultimately affect survival, while others affect the ability to preserve or return to normality. Conclusions: While pt experiences are usually discussed and monitored by HCPs, issues identified as most important to pts and families and their variability over time, are rarely assessed formally during survival. These findings support the development of a pt-centric concept map that defines QoS, provides a comprehensive framework for improving communication between pts and their care teams about long-term QoS in cancer, and potentially enables better treatment decisions.
A randomized controlled trial (RCT) of a supportive care package (SurvivorCare, SC) for survivors of colorectal cancer (CRC).
Authors: Jefford Michael , Gough Karla , Drosdowsky Allison , Russell Lahiru , Aranda Sanchia , Butow Phyllis Noemi , Phipps-Nelson Jo , Young Jane , Krishnasamy Meinir , Ugalde Anna , King Dorothy , Strickland Andrew , Franco Michael Edward , Blum Robert helmut , Johnson Catherine , Ganju Vinod , Shapiro Jeremy , Chong Geoffrey , Charlton Julie , Schofield Penelope
Published: February 2017

79

Background: Colorectal cancer (CRC) and its treatments can cause distressing short and long-term side effects as well as significant functional consequences. Current models of follow-up do not adequately address these issues. We conducted a multi-center RCT of an innovative program (SurvivorCare (SC)); designed to have a beneficial effect on psychological distress, supportive care needs (SCN) and quality of life (QOL). Methods: At the end of active treatment for stage I-III CRC, eligible patients ( =18 years, adequate English) were randomized 1:1 to usual care (UC) or to UC+SC. SC comprised educational materials, needs assessment, an individualized survivorship care plan, nurse-led end-of-treatment session and three follow up (FU) phone calls. Distress (BSI-18), SCN (CaSUN) and QOL (EORTC QLQ-C30, CR29) were assessed at baseline, 2 (FU1) and 6 (FU2) months. Primary hypothesis: SC would have a beneficial effect on distress at FU1. Secondary hypotheses: SC would have a beneficial effect on (1) SCN and QOL at FU1; and (2) distress, SCN and QOL at FU2. 15 items assessed satisfaction with survivorship care. Sample size of 180 (90/arm) was based on 80% power, 2-sided alpha of 0.05, to detect a between groups difference of 3.6 on BSI-18 at FU1. Outcome analysis was ITT. Results: Of 221 patients randomized (111 UC, 110 SC), 4 were ineligible and 1 lost to FU, leaving 110 UC, 106 SC. Groups appeared well balanced. Median age was 64, 52% male, 56% colon, 35% rectal cancer, 10% overlap. Stage I 7%, II 22%, III 71%. Intervention fidelity was acceptable. Baseline distress and QOL were similar to population norms. Between groups differences in distress at FU1 (primary outcome), distress at FU2 and SCN and QOL at FU1 and FU2 were small and non-significant. SC patients were more satisfied with survivorship care than UC patients (significant differences on 10 of 15 items). Conclusions: The addition of SC to UC did not have a beneficial effect on distress, SCN or QOL outcomes but SC patients were more satisfied with survivorship care. Clinical trial information: ACTRN12610000207011.
Provider-survivor communication: Identifying and addressing unmet needs.
Authors: Patterson Angela K. , Escoffery Cam , Hotz James , Paris Nancy M. , Meyer Donna L. , Giblin Joan M. , Michaud Katherine S. , Kirsch Logan J , Wilson Barbara J. , Fournier Jennifer , Helmer Carolyn , Comer Catherine , Kines Joan , Heddon Mary Ann , Sidman Tobyanne , Moon Tamira M. , Cannady Rachel
Published: February 2017

81

Background: The Georgia Cancer Control Consortium’s Survivorship Working Group conducted a needs assessment to understand physical, psychological, practical, and spiritual needs of adult survivors. Results were used to assess survivors’ level of distress and how effectively their needs were being met. Methods: Cross-sectional online and paper-based surveys developed using NCCN and Commission on Cancer (CoC) guidelines. Surveys were distributed through survivorship programs of CoC hospitals (n = 40) and cancer organizations via email, social media and mail. 740 responses received September-December 2014. Results: Respondents were primarily female (78%) married (65%), college-educated (55%) and insured (97%). 83% were White,16% were African American and 3% were Hispanic. 36% of respondents were within 1 year of treatment; 45% were 1 - 5 years post treatment. Survivors reported positive experiences with provider communication. Responses of ‘often’ or ‘very often’ were: provider gave them a chance to ask questions (90.6%); provider involved them in healthcare decisions (84.7%), provider spent enough time with them (78.5%) and provider helped with feelings of uncertainty about health issues or treatment (75.7%). Physical and emotional needs were not as effectively met as spiritual or practical needs. A higher proportion of survivors reported moderate to extreme levels of emotional distress with: depression (32.7%), anxiety (32.1%), stress (30.2%), fear of recurrence (28.2%) and defining a “new normal” (25.9%). 81% of survivors found information and assistance online (56%), in print materials (41%) and from providers/cancer centers (41%). 37% received a survivorship care plan (SCP); 98% reported the SCP was helpful. Conclusions: Results demonstrate the need for providers in Georgia to be educated about and responsive to survivors’ unmet needs and levels of distress. Survivors report positive communication with providers but lower levels of having physical and emotional needs addressed. Survivors actively seek resources and benefit from SCPs. Providers can contribute to addressing needs and reducing distress by maintaining strong communication, guiding survivors to evidence-based resources and implementing SCPs.
Implantable intravenous devices (“ports”) as a survivorship issue.
Authors: Opneja Aman , Rout Amit , Abraham Joseph , Gill Gurkirat , Miller Kenneth David
Published: February 2017

9

Background: Women with early stage breast cancer often receive chemotherapy through implantable intravenous access devices (ports). There is little information on the duration of port use for breast cancer patients who have completed treatment. Methods: The EMR was searched for women who received adjuvant chemotherapy using a port for Stage I-III breast cancer between 2007- 2012. Data abstracted from the EMR included demographics, duration and type of chemotherapy, duration of port use and complications. Results: During the years 2007-2012, a total of 167 patients qualified for the study. 28 (16.8%) patients were excluded as complete data was not available. The Mean age of the remaining 127 women was 60 (SD: 1) years. The distribution of cancer stage was 18.1%, 59.1%, 22.8% of stage I, II, and III respectively. The median total length of duration of indwelling port was 506 days and median duration from chemotherapy completion to port removal was 299 days. The duration of time after completing treatment that the port remained in place was 0-6 months (31.5%), 6-12 months (25.2%), 12-24 months (24.4%), and > 24 months (18.9%). Patients with stage III cancer had significantly longer time to port removal relative to patients with stage I and stage II cancer (p < 0.005). Complications of ports (n = 4), all occurred during active treatment and included non-functioning/mispositioning (n = 2), and thrombosis (n = 2). Assuming the cost of port maintenance was $225 per visit and port maintenance was required every four weeks, the estimated average cost of maintaining the port after the completion of chemotherapy was $3,494 for this group of patients. Conclusions: Oncologists typically do not use the word “cure”; maintaining a port in place after chemotherapy may reinforce concerns about the risk of recurrence. This is highlighted by the fact that treatment type and hormone receptor status were not significantly associated with time of port removal. We found that 43% of patients still have their port in place one year after completing treatment and almost 19% of patients have their port in place greater than two years after completing treatment. The high cost and the possible psychological impact of leaving a port in place for long periods of time needs further study.
Enhancing patient-health care provider (HCP) communication in oncology care in the United States.
Authors: Lane Suzanne , Szabo Shelagh , Halbert Ron , Goertz Hans-Peter , Lai Catherine , Parikh Aparna , Bunce Mikele , Khoury Raya , Small Art , Masaquel Anthony
Published: February 2017

99

Background: Patient engagement is essential for high-quality care. This study aimed to develop novel communication tools to be used between patients and HCPs to address current gaps in cancer care. Methods: Qualitative interviews were conducted with 16 US patients with various cancers and stage, 6 oncology nurses, and 4 oncologists. Goals were to understand: patients’ changing concerns at diagnosis and during treatment; HCPs views on eliciting patient preferences; and perspectives from both on improving care. A thematic analysis was conducted to identify gaps in care. 8 patients rated their experience and importance of quality care items on a scale of 1 (not experienced/not important) to 5 (experienced/very important). Two draft tools were developed to address identified gaps. Results: None of the 16 patients reported using a communication tool before or during treatment. Gaps in quality care were identified, including communication, patient-centered care, education, and comprehensive care. Communication and patient-centered care items important to patients, but not always experienced, included clearly explained treatment options, time to discuss topics of concern, patient-led decision making, an open-minded care team, and the ability to change one’s mind (mean experience ≤ 4). The first tool assesses patient’s life and treatment goals and establishes early expectations through an open-ended questionnaire. This tool aims to enrich communication between patients and HCPs, enabling more patient-centered care. The second tool addresses the importance of ongoing education using a checklist. Treatment outcomes and the impact of treatment on QOL were identified as the two most important education items for patients when making treatment decisions (mean importance = 5). This tool aims to enhance educational discussions and enable patients to specify where more information is desired. Conclusions: Patients reported a need for communication tools at the beginning of treatment, specifically related to patient goals and educational needs. With patient and HCP input, two novel communication tools were developed to improve quality care. Future studies will validate and implement the tools in clinical practice.