bluuebunny/crossref_metadata_2025_split huggingface dataset:
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.