bluuebunny/crossref_metadata_2025 huggingface dataset:
A pilot study of the Pathways program to address fear of recurrence and reduce distress among breast cancer survivors.
Authors: Hadeler Edward Kenji , Wong Emily Claire , Mamounas Matina Elise , D'andrea Carrie , Hicks Greg , Esserman Laura , Melisko Michelle
Published: March 2017

206

Background: Breast cancer patients endorse anxiety and fear of recurrence for years after diagnosis. The Pathways for Survivors is a one-day program intended to address this distress by teaching cognitive behavioral strategies that improve self-efficacy, communication, attitude, and coping. The workshop incorporates an evidence-based program developed by authors/researchers Greg Hicks and Rick Foster, which has been adapted for the breast cancer survivorship population. Methods: Patients who had completed their acute phase of care were invited to attend the workshop. Attendees were asked to complete a series of questionnaires either on paper or electronically at baseline, 1 week and 6 weeks following the program and were consented to have their data used for research. Questionnaires included evaluation of program content and moderator quality, as well as measures to assess the impact of the Pathways intervention including the PROMIS Anxiety and Depression Short Forms, and the Acceptance and Action Questionnaire (AAQ-II). Results: Three sessions were held between 9/2015-9/2016. A total of 27 patients participated (6 in the first, 13 in the second, 8 in the third). Mean age of participants was 49 (range 28-65) years old. Race and ethnicity was: 63% White, 11% Asian, 4% Pacific Islander, 11% other, and 15% Hispanic/Latina (total > 100% due to a patient reporting more than one race/ethnicity). The table below summarizes the change in these scores over time. Evaluations showed that patients were extremely satisfied with the program and moderator, receiving average ratings of 9.6/10 and 10/10, respectively. Conclusions: The Pathways workshop was well received and appears to have at least a short-term impact on breast cancer survivors’ anxiety, depression, and psychological flexibility. [Table: see text]
Improvement in sexual function after ovarian cancer: Sexual therapy and rehabilitation after treatment for ovarian cancer (START-OC).
Authors: Bober Sharon L. , Recklitis Christopher J. , Michaud Alexis L. , Wright Alexi A.
Published: March 2017

210

Background: Sexual dysfunction is a distressing long-term effect after ovarian cancer (OC), affecting up to 90% of survivors for years. Despite its prevalence, treatment-related sexual dysfunction is underrecognized and undertreated for OC survivors. We developed and tested a brief, psychoeducational intervention for managing sexual dysfunction after OC. Methods: 45 OC survivors with sexual dysfunction received a single half-day group intervention that included sexual health education, relaxation and cognitive behavioral therapy (CBT) skills to address sexual symptoms and a single tailored telephone booster call 4 weeks post-group. Assessment measures were completed at 4 time points: Baseline 1, Baseline 2 (after an 8 week no-treatment run-in period), and 2 and 6 months post-intervention. The Female Sexual Function Index (FSFI) assessed sexual functioning and the Brief Symptom Inventory (BSI-18) captured psychological distress. Results: Analyses examined changes from Baseline 1 to subsequent time points. Between Baseline 1 and 2 there were no significant changes on study measures, indicating no natural improvement during the run-in period. In contrast, Total FSFI scores improved significantly from Baseline 1 to the 2 month (n = 45, p < .005) and 6 month (n = 35, p < .05) follow-ups. Effect sizes were moderately large indicating a significant improvement in women’s sexual function post- intervention (d = .5) that was sustained for at least 6-months (d = .4). BSI-18 scores were also significantly improved at the 2 -month (p < .005) and 6 month (p < .01) time-points, compared to Baseline 1. Conclusions: Improvements in overall sexual functioning and psychological distress were observed 2 months post-intervention and maintained at 6 month follow-up, suggesting preliminary efficacy of the intervention in reducing sexual dysfunction in OC survivors. Next steps include collection of additional follow-up data on participants. A randomized trial of START-OC is warranted. Clinical trial information: NCT02287519.
A feasibility study of a new smartphone application for patients with cancer.
Authors: Kitano Atsuko , Shimizu Chikako , Uchitomi Yosuke , Boku Narikazu , Ohi Jun , Sawai Noriko , Tokonabe Yoshie , Fujitomo Takashi , Matsuda Yuta , Sakurai Naomi , Fujiwara Yasuhiro
Published: March 2017

211

Background: Smartphone-applications have been used for self-care, but not all applications have a sufficient level of efficacy. We evaluated the feasibility of a new smartphone application (the App) which has two main functions—diary function and SNS function—and investigated the characteristics of active users. Methods: Patients who visited the Breast and Medical Oncology or GI Medical Oncology divisions at National Cancer Center Hospital were recruited between March and April in 2016. Participants could use the App for 28 days. Web-based survey was performed before and 28 days after using the App. The primary endpoint was Daily Active User (DAU) rate (the number of daily log-in user divided by the number of patients who completed installation). A mean DAU rate higher than 20% was predetermined as feasible. The secondary endpoints were daily diary function user rate, daily SNS function user rate, and overall user rate and change of Edmonton Symptom Assessment System Revised Japanese version (ESAS-r-j) before and after the App use. “Active user” was defined as a participant who used the AppeWe more than median active days for diary or SNS function. Duration of App use was counted from the date of installation to the date of last use, and overall user rate was calculated by Kaplan Meier method. Results: One-hundred and four patients (96%) completed the App installation and answered the first survey. All patients were followed for 28 days. The mean DAU rate was 50.9%. Active diary function user rate was 53% and active SNS function user rate was 40%. Overall user rate was 87.5%. Diary function was used more frequently by male patients than female, and non-breast cancer patients. SNS function was used more frequently by unemployed patients than others, and by patients younger than 40 y/o. We could evaluate the change of ESAS-r-j score in 80 patients who answered the second survey. There was a significant improvement of depression score among patients who were single and who had metastatic disease. Conclusions: The App was considered feasible. Gender, cancer type, job status, and age may influence the behavior of the App use. The App may improve patients’ psychological symptoms, but further investigations are warranted to reveal the clinical utility of the App.
How are quality of life and work productivity associated with living longer with HER2+ metastatic breast cancer?
Authors: Bajaj Preeti S. , Sussman Matthew , Yu Jeffrey , Reyes Carolina M. , Stein Alisha , Lai Catherine , Mayer Musa , Hurvitz Sara A. , Tripathy Debu
Published: March 2017

215

Background: Advances in therapy have led to an increase in survival in women with HER2+ metastatic breast cancer (MBC). However, changes in health-related quality of life (HRQoL) and productivity related to longer survival have not been well studied. Methods: A one-time survey was administered to women recruited through select clinics and advocacy organizations. Inclusion criteria were female sex, age 18+, US residence, and having HER2+ MBC. HRQoL and impact on productivity were assessed using several validated instruments: EQ Visual Analogue Scale (EQ VAS), Functional Assessment of Cancer Therapy-Breast (FACT-B), Rotterdam Symptom Checklist (RSCL), Distress Thermometer (DT), PROMIS Applied Cognition-Abilities-8a, and Work Productivity & Activity Impairment Questionnaire-Specific Health Problem (WPAI-SHP). Regression analyses were conducted to compare differences in measures by years since diagnosis (< 6 vs. ≥ 6 years), adjusting for age. Results: A total of 404 women participated in the survey. Mean age was 54.2 years, 91.6% were white, and 27.5% reported it had been ≥ 6 years since their HER2+ MBC diagnosis. In unadjusted analyses, women living with MBC ≥ 6 years reported significantly greater HRQoL (FACT-B, p=0.01) and emotional well-being (FACT-B EWB, p<0.01), lower distress (DT, p = 0.02; RSCL Physical & Psychological Symptom Distress, p = 0.01 & p = 0.03), and lower impairment due to MBC (WPAI-SHP, p<0.05). No differences were seen in EQ VAS or PROMIS scores. In age-adjusted analyses, women living with MBC ≥ 6 years had significantly greater emotional well-being (FACT-B EWB, p<0.01), lower distress (DT, p<0.05; RSCL Physical Symptom Distress, p = 0.03), and lower activity impairment due to breast cancer (WPAI-SHP, p<0.01). There were no major differences in findings between women recruited online versus in clinics. Conclusions: Women living with HER2+ MBC for ≥ 6 years may experience improvements in HRQoL compared to women diagnosed more recently. This may suggest that women adjust to the disease over time; however, potential selection biases in the recruitment of survey respondents may limit generalizability of these findings. Further investigation of temporal changes in HRQoL is warranted.
Capturing the patient voice in radiotherapy trials: An analysis of trends and future directions of patient-reported outcomes.
Authors: Williams Noelle L. , Ali Ayesha , Dan Tu , Ziemer Kyle , Leiby Benjamin E. , Jim Heather S.L. , Dicker Adam
Published: March 2017

216

Background: The importance of patient-reported outcomes (PROs) has been recognized and this data is increasingly being incorporated into modern radiotherapy (RT) trial design. Despite this, there is a lack of published data regarding collection and reporting of PRO data in the RT setting. We sought to systematically evaluate RT protocols to assess trends of PRO data collection and factors associated with reporting. Methods: We queried multi-institutional RT trials indexed on ClinicalTrials.gov, the Cochrane database, and MEDLINE and identified trials with full protocols available. We collected information in regards to study population, primary and secondary endpoints, quality of life measures, and PRO data. Descriptive and chi-squared analyses were employed to investigate trends and factors associated with PRO reporting. Results: 232 protocols were evaluable (1971-2014) from multiple cooperative groups. Of these, 198 were completed and 34 were in progress. Overall, only 41% of trials had protocol-specified collection of PROs. Of the 155 trials that had at least 1 published report, only 34 (22%) reported PRO data. All nine trials with PRO as a primary endpoint (9/9) had published reports with this information. Treatment era was associated with PRO collection, with 30% of trials collecting PRO data prior to 2005, 48% between 2006 and 2010, and 66% between 2011 and 2015 ( X2 [4, N = 232] = 15.79, p = 0.003). PROs were most likely to be collected in phase III trials ( X2 [4, N = 226] = 59.6, p < 0.0001). Conclusions: PROs are historically under collected and reported in cooperative group RT trials. Despite increasing PRO collection in modern trials, reporting remains suboptimal and may inaccurately inform survivorship issues. As digital literacy progresses, electronic PRO data may offer a potential avenue for improvement. Ultimately, PRO data will serve as a vital component to help define value in newly proposed payment models focused on improving quality of care while reducing cost of care.
Physical activity intervention for patients with advanced pancreatic cancer.
Authors: Denlinger Crystal Shereen , Hall Michael J. , Cohen Steven J. , Astsaturov Igor A. , Dotan Efrat , Engstrom Paul F. , Egleston Brian L. , Fang Carolyn Y
Published: March 2017

217

Background: Physical activity (PA) interventions – including low-intensity, home-based walking programs – can lead to improvements in quality of life (QOL) and symptoms among patients with cancer. Despite the evident benefits, no PA interventions have been evaluated in patients with pancreatic cancer, perhaps due to concerns that these patients are too ill to participate. We assessed the feasibility and safety of implementing a PA intervention among patients with advanced pancreatic cancer. Methods: Patients with unresectable locally advanced or metastatic disease were randomized to a 12-week walking program (intervention; n = 19) or usual care (UC; n = 18). All patients met with a health educator to complete baseline assessments of QOL, symptoms, and physical functioning. Intervention participants were also instructed on how to complete the walking program and received a program booklet, a walking log, and a pedometer. Both intervention and UC patients were contacted every 4 weeks by phone to assess symptoms and changes in medical status. At 12-weeks post-baseline (intervention end), all patients completed assessments again. Results: 70 patients were approached; 37 enrolled on study (53% acceptance rate). Patients’ mean age was 63.5 years; 49% were male. There were no differences in overall QOL, symptoms, or functioning between groups at baseline. 25 of 37 patients completed the study (68%); 11 in the Intervention group and 14 in UC. Primary reason for study drop-out was declining health. Compared to UC, the intervention group reported a significant increase in average duration of physical activity from baseline (11 min/day) to follow-up (35 min/day) (p < 0.05), and improvement in symptoms as assessed by the FACT-Hep (p = 0.06). Importantly, no adverse events were reported among study participants. Conclusions: Despite advanced disease, patients with pancreatic cancer are willing and interested in participating in a PA intervention. Preliminary results suggest that intervention participants increased their PA and reported symptom improvement. Recruitment is ongoing, and clinical outcomes will be explored. In sum, this pilot study suggests that a home-based walking program is feasible and safe among patients with advanced pancreatic cancer. Clinical trial information: NCT02442323.
Exploring the association between diabetes and breast cancer outcomes among Latinas.
Authors: Ashing Kimlin Tan , Samoa Raynald , Lai Lily L. , Hurria Arti , Serrano Mayra , Meyers Eva
Published: March 2017

221

Background: In cancer patients, diabetes increases the risk for poor overall health and cancer-specific outcomes even death. Moreover, both breast cancer (BC) and diabetes are amongst the most common illnesses in Latinas, who have documented poorer outcomes for both diseases. This study examined the impact of co-occurring diabetes on patient outcomes in a sample of Latina breast cancer survivors (BCS). Methods: 137 Latina BCS were recruited from the California Cancer Registry, hospital cancer registries, and community agencies. BCS completed a self-report questionnaire consisting of items related to demographic and medical characteristics, including diagnoses of cancer and diabetes, and physical and functional outcomes. Results: Thirty nine (28%) BCS reported a co-occurring diagnosis of diabetes; this is over twice the rate in the general population. Diabetes was most prevalent among BCS 65 years and older with 43% reporting co-occuring diabetes. BCS with diabetes, controlling for age, were more likely to report advanced BC staging at diagnosis ( p= 0.036) and more severe lymphedema symptoms than BCS without diabetes ( p= 0.038). BCS with diabetes also endorsed lower general health and greater social functioning limitations and physical role limitations than BCS without diabetes ( p= 0.048). Conclusions: This investigation sheds new light on emerging evidence documenting the negative associations of co-occurring chronic conditions, such as diabetes, on cancer patients’ outcomes. Our findings highlight the urgent need for additional inquiry examining multiple chronic conditions, particularly in the face of cancer. Early integrative and coordinated care that attends to multiple chronic conditions, especially among elderly and ethnic minority patients, may serve as a critical target for addressing disparate cancer risk and outcomes to improve quality, patient-centered care and patients’ outcomes. Clinical trial information: NCT00932997.
Do drugs that offer PFS or modest OS benefits improve quality of life in patients with advanced cancer?
Authors: Fallowfield Lesley , Catt Susan L. , May Shirley F , Shilling Valerie M , Matthews Lucy A , Jenkins Valerie A.
Published: March 2017

223

Background: Patients value quality of life (QoL) not just quantity of life but QoL data from measures in advanced disease are sparse for drugs with only progression-free survival (PFS) or modest overall survival (OS) benefits. We examined if stabilisation of metastatic disease and/or disease symptom burden were worth treatment side effects in the AVALPROFS study. Methods: Patients with metastatic cancers starting drugs with PFS or modest OS benefits were interviewed at baseline and following 6 weeks of treatment. Further interviews were conducted at progression or if treatment was stopped for toxicity. Interviews comprised trade-off type assessments exploring worthwhileness of treatment compared with side effects.Patients completed FACT tumor and treatment specific questionnaires monthly for 6 months. Global QoL was measured across time and between patients who died or progressed on study (A), remained on study (B) or withdrew from study due to toxicity (C). Results: 90/120 (75%) eligible patients participated. 31/90 (21%) patients died or progressed within 6 months of study entry (Group A). 12 patients withdrew due to toxicity (Group B) and 47 patients stayed on treatment for 6 months (Group C). At first interview 43/90 (48%) patients had started treatment and by 6 weeks (66/69, 96%) were experiencing side effects. At both interviews patients were significantly less inclined to feel that benefits of cancer control were worthwhile as the possible side effect severity increased (X2=75.6004. p< 0.00001; 50.6896 p< 0.00001 respectively). There was an effect of patient group on general QoL (F=4.978; p = 0.007) but no group by time interaction (F=0.419; p = 0.888). Also, a significant overall group effect (A vs. C) for emotional (F=6.583, p = 0.011) and functional well-being (F=5.138, p = 0.024). More patients in Group C had stable/improved QoL over time. Conclusions: Over 6 months, QoL was stable in those patients receiving drugs with PFS only or minimal OS who could tolerate treatment side effects. As severity of side effects increased, patients were less likely to feel that treatment was worthwhile but a proportion were still willing to accept these for a relatively short increase in the time drugs controlled the cancer.
Unmet need, survivorship concerns, and psychosocial outcomes among testicular cancer (TC) survivors.
Authors: Palmer Steven C , Blauch Abigail N. , Pucci Donna A. , Vaughn David J. , Jacobs Linda A.
Published: March 2017

226

Background: Although some aspects of quality of life are well described among TC survivors, particularly in Europe, unmet need for symptom management, degree of survivorship concern, and their relationship to outcomes such as anxiety and depression have been unexplored among TC survivors in the U.S. Methods: Concurrent TC survivors treated > 1 year prior with no evidence of disease were recruited in a U.S. survivorship clinic. Participants completed a measure of 13 unmet needs and a 17-item scale assessing survivorship concern in follow-up care and screening, symptom management, family and genetic issues, and fear of recurrence (0-3 scale, alpha = 0.92). Anxiety and depression were assessed using the HADS. Results: Participants (N = 199) were primarily white (96%), early middle aged (M = 41 yrs), treated for Stage I (81%) or II TC (11%) with surgery (100%), chemotherapy (39%), and/or XRT (14%) an average of 7 years earlier. 11% reported hormone replacement therapy (HRT), and 16% had experienced a relapse. Participants reported an average 1.1 unmet needs (R = 0-11) with 66% reporting none. Unmet needs most commonly focused on fatigue (16%), sexual interest (12%), weight (12%), and concentration (11%) issues. Survivorship concern was low (M = 1.0) but variable (R = 0-2.9). Depressive (M = 2.1) and anxiety symptoms (M = 4.8) were generally low, though elevated in 4% and 19%, respectively. Age, time from diagnosis, race, curative therapy type, and relapse were unrelated to unmet need, concern, anxiety or depression. Higher staging and those receiving HRT was associated with more unmet need (p < 0.04). Unmet needs were associated with concerns (r = .33), anxiety (r = .24), and depression (r = .50). Concerns were associated with anxiety (r = .36) and depression (r = .32). Conclusions: Psychosocial adaptation appears good among most TC survivors, though a substantial number experience elevated anxiety. Survivorship concerns and unmet needs are associated with poorer adaptation in both depression and anxiety symptoms. Assessing and addressing concerns and unmet needs may improve outcomes among TC survivors.
Colorectal cancer survivors’ surveillance patterns and experiences of care: A SEER-CAHPS study.
Authors: Mollica Michelle A , Enewold Lindsey , Lines Lisa M , Halpern Michael T. , Schumacher Jessica R. , Hays Ron D. , Gibson James Todd , Schussler Nicola C. , Kent Erin E.
Published: March 2017

229

Background: Colorectal cancer (CRC) is the third most commonly diagnosed cancer, generally treated with surgical resection, followed by complex surveillance for recurrence. We examined associations between experiences of care and adherence to surveillance Medicare fee-for-service beneficiaries with a history of CRC. Methods: Using linked data from the National Cancer Institute Surveillance Epidemiology and End Results (SEER) cancer registry program, Medicare claims and the Consumer Assessment of Healthcare Providers and Systems (CAHPS) patient experience surveys (SEER-CAHPS), we identified survivors ages 65+, diagnosed with local/regional first primary colorectal cancer 1999-2009 who underwent surgical resection and completed CAHPS survey within 36 months of diagnosis. Adherence to guidelines for a three-year observation period was defined as receiving a colonoscopy; at least 2 carcinoembryonic antigen (CEA) tests; and more than 2 office visits and 1 computer tomography (CT) imaging test each year. We dichotomized CAHPS ratings into 9 or 10 out of 10 versus 0-9 for analysis (higher ratings mean better quality). Results: Most of the 314 participants reported ratings of 9 or 10 for overall care (55%), personal doctor (59%), and health plan (60%). Slightly less than half (47%) gave their specialist doctor ratings of 9 or 10. Adherence to surveillance was 76% for office visits, 36.9% for CEA testing, 48.1% for colonoscopy, and 10.3% for CT Imaging. Sixty-two percent of the sample were categorized as adherent (receiving ≥ 2 surveillance guidelines). In multivariable models, adherence to office visits was positively associated with ratings of personal doctor (OR = 2.0; 95% CI = 1.1, 3.5) and specialist doctor (OR = 2.7; 95% CI = 1.4, 4.9), and overall adherence was associated with ratings of personal doctor (OR = 2.1; 95% CI = 1.2, 3.6). Conclusions: Findings point to the important role of patient-provider relationships in adherence to CRC post-resection surveillance guidelines. As adherence to surveillance may increase survival among CRC survivors, further investigation is needed to identify specific components of this relationship, as well as other potential modifiable drivers of surveillance guidelines.
Designing an intervention program for cancer survivors and work.
Authors: Aubel Dawn
Published: March 2017

23

Background: Nearly two-thirds of cancer survivors return to work after their diagnosis, experiencing unique challenges as they strive to maintain health and career goals. Keeping the workforce healthy through innovative solutions is essential for employers and society. The purpose of this study was to describe the needs of cancer survivors who continue to work and to improve a navigation program designed to optimize well-being. The conceptual framework of the Cancer Survivorship and Work Model by Mehnert, de Boer, & Feuerstein (2013) was used to guide program development and outcomes measurement. Methods: Participants included cancer survivors who were employed at a company where a navigation-based program was offered. Two study groups included individuals who used the intervention program and non-users. There were a total of 7 participants in the intervention group and 17 participants in the non-user group. A mixed-methods design was used. Self-efficacy, emotional support, and informational support were evaluated using validated patient-reported outcome (PRO) instruments. Patient satisfaction with the navigator relationship among program users was assessed. Open-ended questions were asked to gain a richer understanding regarding a supportive work intervention. Results: Among participants, there were deficits in self-efficacy and social support. There was no significant difference between groups. There was high satisfaction with the navigator relationship. Qualitative themes included a desire to maintain privacy, and the struggle to integrate health-related needs and high work demands. Conclusions: Population health challenges associated with cancer survivorship should be addressed by relevant interventions and further research. A dedicated work program is appropriate for work success. The navigation design should be further developed and available to employers aiming for a culture of health. Future research should include intervention evaluation using PROs, qualitative inquiry of cancer survivors regarding privacy and work, and applications to other chronic diseases.
Successful integration of genetic counseling in a comprehensive childhood cancer survivorship clinic.
Authors: Shah Shafqat , Aune Gregory John , Mette Lindsey , Poullard Natalie
Published: March 2017

230

Background: Awareness of inherited genetic risk and cancer predisposition has markedly increased. Research has shown that germline mutations in known cancer predisposition genes are identified in ~8% of pediatric oncology patients. Patients diagnosed years ago did not meet with a Genetic counselor or undergo genetic testing. The annual comprehensive survivorship visit provides cancer survivors an opportunity to review personal and family history and receive Genetic counseling. Methods: Our group initiated a pilot project in our Childhood Cancer Survivorship clinic (CCSC) to assess the feasibility of introducing survivors to a Certified Genetic Counselor (CGC). Initially, a chart review of annual visits that took place over a 3-month period was performed. A record of documentation of family history and genetic counseling was made. During the pilot period, survivors and their families were given the option to meet with a CGC. The CGC prepared a pedigree and made specific written recommendations regarding the indication, if any, for genetic testing in the patient or family. Anonymous post-counseling surveys were mailed to the families to gauge their satisfaction. Results: Prior to the pilot, 38 survivors were seen for annual visits over a 3 month period. Chart review identified no formal genetic counseling. A note of a family history of cancer was made in 1 patient. During the 3 month implementation period, 50 survivors were seen for annual visits. Thirty-four ( ~70%) accepted the offer to see a CGC. Of the 16 that did not meet with a CGC, 3 had significant medical issues that required attention, 2 had Down syndrome and 2 had previous genetic counseling. The rest declined interest with no specific rationale. Very few (3) surveys were returned. All rated the experience highly. Conclusions: Our experience in a multi-disciplinary CCSC supports the feasibility of delivering CGC services to long-term survivors of cancer. A majority of survivors were interested in meeting with the CGC. Further development of this program will focus on educating survivors about cancer predisposition and increasing access to CGC services.
Racial disparities in financial outcome among older adults with cancer: Analysis of the Health and Retirement Study.
Authors: Castellanos Emily
Published: March 2017

3

Background: Financial hardship from cancer is often attributed to high costs of care, but the relationship of out-of-pocket (OOP) medical burden to racial disparities seen in financially distressed cancer patients is underexplored. Using the Health and Retirement Study, a national longitudinal survey of U.S. households from 1992-2012, we examined the effect of a cancer diagnosis on financial hardship and OOP medical spending among black and white adults age-eligible for Medicare insurance. Methods: Analyses were restricted to adults 65 years or older to reduce heterogeneity in employment and insurance. Financial hardship was defined as new financial insolvency, > 50% decline in net worth, acquisition of debt, or high medical burden (OOP medical spending > 20% of income). The proportions of black and white cancer patients reporting financial hardship, as well as OOP medical spending, household debt, income, net worth, and insurance status by racial group were determined. Statistical comparisons using a t-test for proportions or Wilcoxon rank-sum testing were performed. Results: A total of 2158 white and 322 black cancer patients were identified. Black cancer patients were more likely than white cancer patients to report new financial insolvency (6.8% vs 1.6%; p < 0.0001), loss of > 50% of net worth (26.7% vs 15.3%; p < 0.0001), or new debt (27.6% vs 14.9%); p < 0.0001). OOP medical spending, median household income, and net worth were significantly lower in black vs white cancer patients. The rate of high medical burden was similar between black vs white patients (22.1% vs 21.6%, respectively). Dual Medicare/Medicaid enrollment was higher among black vs white cancer patients, at 23.1% and 7.4%. Conclusions: Significant racial disparities in the prevalence of financial hardship were seen among older adult cancer patients, despite lower OOP medical spending and increased dual Medicare/Medicaid enrollment by black vs white cancer patients. Interventions aimed at alleviating disparities in financial outcome among cancer patients should account for pre-existing differences in socioeconomic status in addition to direct medical costs.
Uncharted territory: Life after cancer for young adults.
Authors: Beaupin Lynda M. , Hydeman Jennifer A , Uwazurike Odochi
Published: March 2017

30

Background: Similar to survivors of childhood cancer, young adult (YA) survivors have distinct and complex medical and psychosocial needs. However, there are no specific follow-up guidelines for patients who were diagnosed as a young adult. Most YA survivors receive inadequate survivorship care with minimal surveillance for late effects. This study aims to examine the concept of survivorship care planning and determine what aspects of post-therapy care is most needed. Methods: Two focus groups were held to investigate the post treatment experience of YA survivors. Participants completed cancer treatment and were diagnosed between 2005 and 2011. They either continued to receive follow-up care or did not. These were further subdivided based on age at diagnosis: 18-24; 25-30; 31-39 years. Participants answered predetermined questions during their session. A demographic questionnaire was given and a SCP (a treatment summary [TS] and its associated long- and late-term risks) developed based on their electronic medical records. Results: 27 YAs participated in the focus groups. SCPs were developed for each participant and required 45 - 180 minutes to complete. 78% felt TS were accurate and 44% learned of long/late-term side effects they were previously not aware of nor receiving surveillance on. Barriers to continued follow-up were related to health insurance status, poor communication with their oncologist, and on-going adjustment challenges. Initial feedback from the SCPs indicates that YAs seek additional information on long/late-term side effects, roadmap for follow-up visit, and information on psychosocial support and YA specific resources. Conclusions: For young adults diagnosed with cancer, there are no guidelines on follow-up care. Young adult survivors are not aware of long- and late-term side effects they may have, and many do not know how often they need to have continued follow-up. Despite great strides made in survivors of childhood cancer, the same cannot be said for young adult survivors.
Inequities in cancer outcomes between different healthcare systems in Brazil.
Authors: Ashing Kimlin Tan , Bergerot Cristiane Decat , Philip Errol James , Okuma Getulio
Published: March 2017

31

Background: Studies have shown a clear difference among minority and economically disadvantaged patients. Less is known about marginalized populations in Brazil, a country that possesses a two-tiered healthcare system, based on socioeconomic status. We sought to explore differences in quality of life (QOL) and distress among patients receiving care within these systems. Methods: 270 patients were assessed for distress (DT), anxiety/depression (HADS) and QOL (FACT-G). Half of them was recruited at a private institution (PRI) and the other at a public institution (PUB) (each group: n=135; 68.9% breast and 31.1% gynecological cancers). We calculated descriptive statistics and examined QOL and distress using T-test and ANOVA. Results: We found ethnic differences between PUB (50.4% white, 32.6% mulato and 14.1% black) and PRI patients (82.9% white), and income disparities (PUB patients report almost a third less monthly income than PRI patients). PUB patients were mostly late-stage diagnosed 70.4% compared to PRI counterpart 42.2% (p<.001). In general PUB patients reported higher rates of distress and anxiety/depression (p<.03); and poorer QoL outcomes (p<.01). Conclusions: This preliminary study is one of the first to investigate inequities in cancer outcomes among patients in Brazilian healthcare settings. Analyses revealed notable differences between groups across demographic characteristics, while individuals of lower socioeconomic status reported significantly poorer psychosocial outcomes. These results suggest a complex interaction between ethnicity, access to care and cancer outcomes, and warrants further research to better understand and address these inequities. Further discussion of the role of psycho-oncology research and clinical practice in reducing disparate outcomes among Brazilian cancer patients is warranted.
Gaps in supportive and survivorship care for lung cancer patients.
Authors: Perloff Tara , King Jennifer C. , Rigney Maureen
Published: March 2017

32

Background: Clinical guidelines increasingly recommend an expansion of multidisciplinary care for oncology patients to include supportive and survivorship care. Despite recommendations, lung cancer patients may not access these services due to implementation challenges among health care delivery systems. Our study goal was to assess treatment and care planning from the perspectives of lung cancer patients and caregivers. Methods: A Community Needs Assessment survey was electronically distributed to lung cancer patients and caregivers. 820 people responded, including 471 patients and 349 caregivers. The overall completion rate was 72.6%. The survey assessed the patient’s care team, values-based discussions in care planning, discussions regarding palliative care, and survivorship care planning. Demographic information was collected to determine if patterns of care correlated with geographical or socioeconomic factors. Results: Less than 50% of patients reported having a conversation about their values and care goals with their treatment team before determining their treatment plan. Less than 30% of patients reported a mental health professional, social worker, palliative care specialist, or nurse navigator as part of their care team. Although research shows a survival benefit to lung cancer patients receiving palliative care, only 26.9% of active patients had discussed palliative care and 20.13% reported receiving it. For caregiver reported data, the patients receiving care had more advanced cancer and had often not survived. Of those who had completed treatment and survived more than 5 years beyond diagnosis, only 22% of patients and 15% of caregivers reported having a survivorship care plan. Conclusions: The majority of lung cancer patients and caregivers reported having not received palliative care, survivorship care plans, psychosocial support, or values-based discussions with their oncologist. Respondents were technology enabled and generally health literate indicating that these problems could be more widespread in rural, lower socioeconomic areas where lung cancer is common. Addressing these problems in health care delivery could positively impact the survivorship of lung cancer patients and their families.
Online survey of young adult cancer survivors and illness-related stressors.
Authors: Golchin Ava , Dawson George Anthony
Published: March 2017

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Background: Post-traumatic stress disorder (PTSD) in cancer patients and those with life threatening illnesses has been officially recognized in the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition: DSM-4, since 1994. However, the updated 2013 DSM-V has redefined the idea of trauma and stress-related disorders resulting from life threatening illness as an amalgam of anxiety and adjustment disorders which must meet heightened criteria to be diagnosed as cancer-related PTSD (ca-PTSD) (1). Methods: In this pilot survey of Millennials and Generation X cancer survivors, ages 18-35 and 35-50 respectively, we queried based on DSM-V guidelines for basic demographics, illness-related stressors, as well as knowledge of ca-PTSD. We sent an electronic survey to 20 members of a social support group in May 2016. Results: Of the 13 survey respondents, 9 were female and 4 were male. Half of the respondents were from the Generation X and Millennial groups. None were military veterans. 6 were single, 4 were married, and 3 were in stable long term relations. 11 of 13 had a college degree or greater, and all but one had their cancer diagnosed after 2010. Respondents rated illness stressors as: 92% Possible illness progression; 77% Romance and/or reproductive; 77% Job-related; 77% Family dynamics and insecurities; 69% Social interaction insecurities; 69% Physician or Care-provider interactions and insecurities. All were aware of PTSD in general but only 4 reported discussion with a care provider. None recalled being screened for PTSD. Eight were unsure if more emphasis should be placed on ca-PTSD. Conclusions: This cohort further validates the new DSM-V inclusion of illness-adjustment and resultant anxiety to diagnose cancer related stress disorders, narrowing the scope of ca-PTSD diagnosis.With this survey we underline the importance of identifying illness-related stressors utilizing psychological distress monitoring, educating patients on symptoms and prevalence of cancer related stress disorders, and communication with the patient concerning cancer-related stress disorders and ca-PTSD diagnosis.
Transition from active treatment to survivorship care for childhood cancer patients.
Authors: Gowda Madhu S , Mauck Anne G.C , Bitsko Matthew , Morgan Alma , Dillon Robyn , Godder Kamar
Published: March 2017

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Background: It has been described that the transition at the end of treatment is a time for relief that the treatment is over but also for fear of recurrence, dealing with the physical sequelae of treatment, reintegration back with friends and with school. To address these concerns we developed a transition program with a goal to provide information, offer educational support and also assess the needs of this group by individual interviews and by measuring stress/anxiety/depression among patients and parents. Methods: Patients who were between 3 months pre and 1 year post end of treatment were enrolled. We conducted 4 educational ‘Forums’, worked with them to develop education plans by individual testing and school meetings were held to implement educational plans. Emotional status was assessed with Questionnaires such as the Revised Anxiety and Depression Scale (RCADS-P), Impact of Events Scale-Revised (IES-R), Brief Symptom Inventory (BSI), and the State Trait Anxiety Scale (STAI-C). Results: We had 7 patients attending the first 2 forums. When it was opened up to those beyond 1 year from the end of treatment, we had about 17 patient/parents that attended each of the subsequent forums. Compared to the numbers attending the forums, there was a higher request for one-to-one testing, individual school meeting, and requests for educational resources (53 school meetings held during that period). We had 38 parents and 21 children that completed the psychological screeners in total. On the RCADS-P, parents most often reported elevated symptoms of depression in their children. Findings showed that very few transition patients endorsed significant anxiety on the STAI-C. On the IES-R and BSI, the parents reported a higher level of anxiety, depression and post-traumatic stress. Conclusions: Patients in the transition phase were less involved in educational forums compared to Long Term survivors, the majority of them seeking one-on-one educational help. We hypothesize that problems become more evident as more time passes from the end of treatment. Also, between the RCAD-S and the BSI in adult survivors, depression seems to be the primary construct rather than anxiety.
Building an embedded primary care survivorship model using an implementation science approach.
Authors: Hahn Erin Elizabeth , Munoz-Plaza Corrine E. , Garcia Delgadillo Jazmine , Schottinger Joanne E. , Brasfield Farah , Gould Michael K , Parry Carla
Published: March 2017

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Background: There is limited understanding of factors that affect uptake of different models of survivorship care. Few systems have incorporated implementation science into program planning and implementation. Guided by the Consolidated Framework for Implementation Research (CFIR), we conducted an evaluation of stakeholder-perceived acceptability and feasibility of an embedded primary care provider (PCP) survivorship care model as the initial step of an implementation project within an integrated healthcare system. Methods: We identified clinical, operational, and patient stakeholders and conducted semi-structured qualitative interviews. Interviews were recorded, transcribed, coded, and analyzed. Deductive thematic categories were derived a priori from CFIR domains (e.g., acceptability, culture); thematic sub-categories were developed inductively. Results: We interviewed 12 stakeholders; a diverse array of themes was identified. Acceptability: Oncologists and operational leaders perceived the model to be an acceptable solution to issues of capacity and efficiency with the potential to improve quality; however, several oncologists perceived negative consequences including “[loss of] the joy of medicine”. PCPs perceived difficulty in co-managing existing patient panels and new survivors. Patients were less enthusiastic, fearing the loss of a trusted clinician and wary about the introduction of “[someone] who doesn’t know me.” Feasibility: Organizational confidence was high that this model can succeed, although there was concern about finding the right PCP and investment in training and staff support. Culture: Numerous system-level facilitators were identified, including the integrated structure: “We don’t have a fee for service mentality so nobody’s giving up revenue.” Conclusions: Acceptability and feasibility for this model were high among oncologists and operational leaders but patients were ambivalent. Successful implementation requires training and support of engaged PCPs and staff, and a formalized patient transition introduced early in the care trajectory. Operationalization of survivorship models may be improved with integration of implementation science methods.
Implementing mental health screening, assessment, and navigation program in a community-based survivorship program.
Authors: Howe-Martin Laura , Lawrence Stephanie L. , Jester Bryan , de la Garza Nancy , Benedetto Natalie , Mazour Tracy , Walker Robrina , Jha Manish , Argenbright Keith Edward , Trivedi Madhukar H
Published: March 2017

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Background: ASCO guidelines recommend cancer survivors be evaluated, treated, & reassessed for depression & anxiety along the trajectory of care. To meet these guidelines, UT Southwestern Moncrief Cancer Institute instituted an integrated approach to mental health screening, assessment, & navigation called MH-SCAN. (Andersen, BL, Rowland, JH, Somerfield, MR. Screening, assessment, and care of anxiety and depressive symptoms in adults with cancer: an American Society of Clinical Oncology guideline adaptation.J Onc Prac, 2015. 11(2): p. 133-134.) Methods: MH-SCAN uses the Vital Sign6 (VS6) program, a web-based application to screen & monitor psychiatric symptoms, and to give feedback regarding measurement-based care (MBC). Measures are repeated at 2-week intervals when possible for those who need treatment. Our implementation process, including training & workflows, will be reviewed. Results: Patients (N = 415) enrolled from 9/1/15 to 8/1/16 in our community-based Survivorship Program (see table) were screened using VS6, of which 119 reported symptoms indicating potential depression. Over 90% of that subset reported moderately severe symptoms and 87% endorsing comorbid symptoms of anxiety. Approximately 60% of the original sample completed reassessment within 4 weeks. Over half continued to endorse significant depressive symptoms, as well as suicidal ideation and comorbid anxiety. Conclusions: Implementing ASCO recommendations for mental health screening, assessment, and treatment adherence, while challenging, is feasible. Our preliminary data underscores its importance among survivors. The MH-SCAN protocol provides a useful approach to implementing screening guidelines efficiently and effectively, thus addressing mental health comorbidities within oncology and primary care.[Table: see text]