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BACKGROUND Five-year relative survival for adolescent and young adult (AYA) patients with cancer diagnosed at the ages of 15 to 39 years is 85%. Survival rates vary considerably according to the cancer type. The purpose of this study was to analyze long-term survival trends for cancer types with the highest mortality among AYAs to determine where the greatest burden is and to identify areas for future research. METHODS Using data from the Surveillance, Epidemiology, and End Results cancer registry and the National Center for Health Statistics, the authors examined the incidence, mortality, and survival for the 9 cancer types with the highest mortality rates in this age group from 1975 to 2016. JPSurv, new survival trend software, was used in the analysis. RESULTS Results suggested significant improvements in 5-year relative survival for brain and other nervous system tumors, colon and rectum cancer, lung and bronchus cancer, acute myeloid leukemia, and non-Hodgkin lymphoma (all P values < .05). Limited or no improvement in survival was found for female breast cancer, cervical cancer, ovarian cancer, and bone and joint sarcomas. CONCLUSIONS Five-year relative survival for multiple cancer types in AYAs has improved, but some common cancer types in this group still show limited survival improvements (eg, ovarian cancer). Survival improvements in colorectal cancer have been overshadowed by its rising incidence, which suggests a substantial disease burden. Future research should focus on female breast, bone, ovarian, and cervical cancers, which have seen minimal or no improvements in survival. LAY SUMMARY Survival trends for adolescents and young adults with cancer are presented from a 40-year period. Although survival progress is noted for brain cancer, lung cancer, acute myeloid leukemia, and colon and rectum cancer, the incidence of colon and rectum cancer remains high. Minimal progress is evident for female breast, bone, ovarian, and cervical cancers, which are in need of renewed focus.

The National Cancer Institute has supported cancer survivorship science for many years, yet few funded studies have examined the needs of individuals living with cancer that is advanced or has metastasized. This report analyzes currently active National Institutes of Health (NIH) grants focused on survivorship for patients living with advanced or metastatic cancers to identify emerging research topics in this population and gaps in current science. A search of all NIH research grants that received funding in Fiscal Year 2020 focused on this population was conducted, excluding grants with a primary focus on end-of-life care, tumor progression or staging and grants for which the only outcome was survival. A total of 25 active grants met the inclusion criteria. Most were funded using the R01 grant mechanism and included a range of cancer types and topics such as palliative/supportive care, psychosocial support, health services, and symptom sequelae. Although currently funded grants focus on several important topics, gaps in the portfolio remain. There is a need to enhance the grant portfolio of research studies focused on the longitudinal examination of unmet needs, models of care delivery, impact of innovative therapies, and the impact of financial hardship for individuals living with advanced or metastatic cancer. This review of current NIH studies suggests a need for expanded research on individuals living with advanced or metastatic cancer. Moving forward, enhancing research focused on key gap areas will be critical to improve care and outcomes for this growing population.

Purpose Older cancer survivors (≥ 65 years at diagnosis) are at high-risk for multimorbidity (2 + comorbid conditions). However, few studies have utilized a generalizable sample of older cancer survivors to understand how individual comorbid conditions, as opposed to total comorbidity burden, are associated with health-related quality of life (HRQOL). We examined associations between HRQOL outcomes (pain, fatigue, physical function), individual comorbidities (cardiovascular disease [CVD], lung disease, diabetes, arthritis) and total comorbidity (cancer-only, cancer + 1 condition, cancer + 2 or more conditions). Methods Utilizing a population-based sample of 2019 older cancer survivors, we tested associations between comorbid conditions and the HRQOL outcomes using generalized linear models. HRQOL domains were assessed using Patient-Reported Outcome Measurement Information System® (PROMIS®) measures. Comorbidity was assessed via self-report. Results Cancer survivors with lung disease reported significantly worse physical functioning (β = − 4.96, p

Objective To review characteristics and experiences of informal cancer caregivers. Data Sources Recent empirical studies and review papers on informal cancer caregiving. Conclusion Increasing cancer prevalence and shifts toward outpatient care place substantial burden on caregivers. Cancer progression, treatment, and individual characteristics influence the caregiving experience. Longitudinal research and the development, testing, and implementation of effective interventions for cancer caregivers are needed. Implications for Nursing Practice Nurses play key roles in efforts to support cancer caregivers. Nursing interventions that incorporate caregiver preparation, support, and training in caregiving tasks are warranted.

Purpose To estimate cancer population-based reference values in the United States for eight PROMIS (Patient-Reported Outcomes Measurement Information System) domains by age and stage of disease. Patients and Methods For the Measuring Your Health (MY-Health) study, persons newly diagnosed with cancer (prostate, colorectal, non–small-cell lung, non-Hodgkin lymphoma, breast, uterine, or cervical) from 2010 to 2012 (N = 5,284) were recruited through the National Cancer Institute’s SEER Program. Participants were mailed surveys 6 to 13 months after diagnosis. Raking by race/ethnicity, age, and stage generated weighted average PROMIS scores for pain interference, fatigue, anxiety, depression, sleep disturbance, physical function, ability to participate in social roles, and cognitive function. PROMIS measures are standardized to a T-score metric, with a score of 50 representing the general US population mean. Clinically meaningful differences were defined as a 3-point difference in scores. Results Several reference values (means) for patients with cancer were worse than the general United States population norms of 50. These include pain interference (52.4), fatigue (52.2), and physical function (44.1). Reference values were highest (ie, showed greatest symptom burden) in lung cancer (pain interference, 55.5; fatigue, 57.3; depression, 51.4) and cervical cancer (anxiety, 53.2; sleep disturbance, 53.4). Reference values for patients age 65 to 84 years reported lower sleep disturbance, anxiety, and depression, and better cognitive function than younger patients. Cancer reference values were poorer among those with advanced disease compared with patients with limited or no evidence of disease, specifically physical function (41.1 v 46.6, respectively), fatigue (55.8 v 50.2, respectively), and pain interference (55.2 v 50.9, respectively). Conclusion In a large, population-based sample of patients with recently diagnosed cancer, we observed symptom severity and functional deficits by age, stage, and cancer type consistent with the expected impact of cancer diagnosis and treatment. These United States cancer reference values can help facilitate interpretation of the PROMIS domain scores in research studies or in clinical applications that measure and evaluate the symptom and functional burden patients with cancer experience after initial treatment.

PURPOSE: Patient-Reported Outcomes Measurement Information System® (PROMIS®) physical function, cognitive function, and sleep disturbance measures are increasingly used in cancer care. However, there is limited guidance for interpreting the clinical meaning of scores. This study aimed to apply bookmarking, a standard setting methodology, to identify PROMIS score thresholds in the context of cancer care. METHODS: Using item parameters, we constructed vignettes of five items covering the range of possible scores. Focus groups were held with cancer care providers and people with cancer. Terminology for categorizing levels of severity was explored. Participants rank ordered vignettes by severity and then placed bookmarks between vignettes representing different levels of severity. Group discussion was held until consensus on bookmark placement was reached. RESULTS: Clinicians selected “within normal limits,” “mild,” “moderate,” and “severe” to describe levels of severity. Both patients and clinicians were able to apply these labels, but there was not unanimous support for any set of descriptors. Clinicians and patients agreed on all severity thresholds for sleep disturbance. For cognitive and physical function, clinicians and patients agreed on the threshold between “within normal limits” and “mild.” However, patients required greater dysfunction than clinicians before applying “moderate” and “severe” labels. CONCLUSIONS: Bookmarking can be applied to develop provisional score interpretation for PROMIS measures. Patients and clinicians were frequently consistent in their bookmark placement. When there was variance, patients required more dysfunction before assigning more severity. Additional research with other cancer samples is needed to evaluate the replicability and generalizability of our findings.

Physical activity (PA) promotes physical functioning and health-related quality of life in older survivors of cancer. Using a population-based sample of Medicare Advantage beneficiaries, we aimed to characterize the survivors who reported discussing PA with their healthcare provider.Data from the Surveillance, Epidemiology, and End Results (SEER) cancer registries was linked with the 2008-2014 Medicare Health Outcomes Survey (MHOS). Older survivors diagnosed with localized- or regional-stage female breast, prostate, or colorectal cancer ≥24 months prior to survey and had visited a healthcare provider in the previous year were included in the multiple logistic regression model. Best-fitting models were identified using the Hosmer and Lemeshow Goodness-of-Fit test.The final sample (N = 5630) included 3006 survivors who reported discussing PA and 2624 survivors who did not report discussing PA. Older survivors of cancer were significantly more likely to report discussing PA if they had a history of cardiovascular disease (p .001), diabetes (p .001), or musculoskeletal disease (p .001); had a history of fall(s) in the previous twelve months (p = .003); or were obese (p .001).PA is an important aspect of the management of cancer, other comorbid conditions, and maintenance of physical functioning in older adulthood. The results suggest that PA discussions are not occurring consistently across survivors, and key opportunities for health promotion are being missed. Future work should identify ways to encourage these conversations in all cancer follow-up appointments.

Historically, adolescents and young adults (AYA) diagnosed with cancer have been an understudied population, and their unique care experiences, needs, and outcomes were not well understood. Thus, 10 years ago, the National Cancer Institute supported the fielding of the Adolescent and Young Adult Health Outcomes and Patient Experiences (AYA HOPE) study to address this gap. We recruited individuals diagnosed at ages 15 to 39 with germ cell, Hodgkin and non-Hodgkin lymphoma, acute lymphoblastic leukemia, and sarcoma from Surveillance, Epidemiology, and End Results cancer registries into the first multicenter population-based study of medical care, physical, and mental health outcomes for AYAs with cancer in the United States. This review of the 17 published manuscripts showed low awareness of clinical trials and substantial impact of cancer on financial burden, education and work, relationships and family planning, and physical and mental health. It highlights the feasibility of a longitudinal population-based study and key lessons learned for research on AYAs with cancer in and beyond the United States.

Background: Existing comorbidity indices were not developed for adolescent and young adults (AYA) 15 to 39 years of age. The aim of this study was to assess impact of comorbidities on health care service needs and health status among AYA cancer survivors using the newly developed AYA HOPE comorbidity index in comparison with the existing indices. Methods: Data on comorbid conditions were obtained from medical records and service needs and health status were from a survey of AYA cancer survivors. Prevalence of comorbidities was based on the AYA HOPE index. Charlson and NCI indices were compared. Multivariable logistic regression was used. Results: Of the 485 patients, 14.6% had ≥2 comorbidities based on the AYA HOPE Index. Prevalence of mental illness and obesity/overweight, which were not included in existing indices, were 8.2% and 5.8%, respectively. Prevalence of cardiovascular, endocrine, gastrointestinal, and neurologic conditions were higher with the AYA HOPE Index than the other two indices. Forty percent of AYA patients reported service needs, particularly for mental health services (25.2%) and support groups (17.7%). Having ≥2 comorbidities on the AYA index was associated with higher mental health service needs [OR, 2.05; 95% confidence interval (CI), 1.10–3.82] adjusting for demographic and clinical factors. Comorbidities were associated with fair/poor self-reported health status. Conclusion: The AYA HOPE Index is a more comprehensive comorbidity index for AYA cancer patients than existing indices, and the number of comorbidities is associated with service needs and health status. Impact: The AYA HOPE index could identify patients' additional service needs early in therapy. Cancer Epidemiol Biomarkers Prev; 24(12); 1844–9. ©2015 AACR.

Author(s): DeRouen, Mindy C; Smith, Ashley Wilder; Tao, Li; Bellizzi, Keith M; Lynch, Charles F; Parsons, Helen M; Kent, Erin E; Keegan, Theresa HM; AYA HOPE Study Collaborative Group | Abstract: ObjectiveAdolescents and young adults (AYAs) diagnosed with cancer between 15 and 39 years of age often report need for greater amounts of cancer-related information and perceive that cancer has had a negative impact on control over their life. We examined whether unmet information need and perceived control over life are associated with health-related quality of life (HRQOL).MethodsWe examined data from 484 AYA cancer survivors recruited from population-based cancer registries in 2007-2008. Participants completed surveys a median of 11 months after diagnosis. Multivariable linear regression analyses estimated associations of unmet cancer-related information needs and impact of cancer on control over life on HRQOL (SF-12).ResultsTwo-thirds of AYAs reported an intermediate or high level of unmet information need, and half (47%) reported a negative impact of cancer on control. Greater unmet information need was associated with lower overall mental and physical HRQOL and lower levels of all HRQOL subscales except vitality. A negative impact on control over life was associated with lower overall mental HRQOL as well as lower HRQOL across all subscales except general health perceptions (all p l0.05). In multivariable analyses, perceived control and unmet information need were independently associated with HRQOL (p-values for interaction g0.1).ConclusionsAdolescent and young adult patients with cancer have high levels of unmet cancer-related information needs and perceived negative impact of cancer on control over life; both were independently associated with lower HRQOL. Addressing unmet information needs among AYA cancer survivors and finding ways to increase their sense of control may help improve HRQOL in this understudied population.

© 2014 American Cancer Society. BACKGROUND: Research on health-related quality of life (HRQOL) among older adult cancer survivors is mostly confined to breast cancer, prostate cancer, colorectal cancer, and lung cancer, which account for 63% of all prevalent cancers. Much less is known about HRQOL in the context of less common cancer sites. METHODS: HRQOL was examined with the 36-Item Short Form Health Survey, version 1, and the Veterans RAND 12-Item Health Survey in patients with selected cancers (kidney cancer, bladder cancer, pancreatic cancer, upper gastrointestinal cancer, cancer of the oral cavity and pharynx, uterine cancer, cervical cancer, thyroid cancer, melanoma, chronic leukemia, non-Hodgkin lymphoma, and multiple myeloma) and in individuals without cancer on the basis of data linked from the Surveillance, Epidemiology, and End Results cancer registry system and the Medicare Health Outcomes Survey. Scale scores, Physical Component Summary (PCS) and Mental Component Summary (MCS) scores, and a utility metric (Short Form 6D/Veterans RAND 6D), adjusted for sociodemographic characteristics and other chronic conditions, were calculated. A 3-point difference in the scale scores and a 2-point difference in the PCS and MCS scores were considered to be minimally important differences. RESULTS: Data from 16,095 cancer survivors and 1,224,549 individuals without a history of cancer were included. The results indicated noteworthy deficits in physical health status. Mental health was comparable, although scores for the Role-Emotional and Social Functioning scales were worse for patients with most types of cancer versus those without cancer. Survivors of multiple myeloma and pancreatic malignancies reported the lowest scores, with their PCS/MCS scores less than those of individuals without cancer by 3 or more points. CONCLUSIONS: HRQOL surveillance efforts revealed poor health outcomes among many older adults and specifically among survivors of multiple myeloma and pancreatic cancer.

Adolescent and young adults (AYAs) face challenges in having their cancers recognized, diagnosed, treated, and monitored. Monitoring AYA cancer survival is of interest because of the lack of improvement in outcome previously documented for these patients as compared with younger and older patient outcomes. AYA patients 15–39 years old, diagnosed during 2000–2008 with malignant cancers were selected from the SEER 17 registries data. Selected cancers were analyzed for incidence and five-year relative survival by histology, stage, and receptor subtypes. Hazard ratios were estimated for cancer death risk among younger and older ages relative to the AYA group. AYA survival was worse for female breast cancer (regardless of estrogen receptor status), acute lymphoid leukemia (ALL), and acute myeloid leukemia (AML). AYA survival for AML was lowest for a subtype associated with a mutation of the nucleophosmin 1 gene (NPM1). AYA survival for breast cancer and leukemia remain poor as compared with younger and older survivors. Research is needed to address disparities and improve survival in this age group.

We examined whether waist circumference (WC) and waist-to-hip ratio (WHR) after breast cancer diagnosis are associated with all-cause or breast cancer-specific mortality and explored potential biological pathways mediating these relationships. Our analysis included 621 women diagnosed with local or regional breast cancer who participated in the Health, Eating, Activity, and Lifestyle study. At 30 (±4) months postdiagnosis, trained staff measured participants’ waist and hip circumferences and obtained fasting serum samples for biomarker assays for assays of insulin, glucose, C-peptide, insulin growth factor-1 and binding protein-3, C-reactive protein (CRP), and adiponectin. We estimated multivariate hazard ratios (HR) and 95 % confidence intervals (CI) for death over *9.5 years of follow-up. After adjustment for measured body mass index, treatment, comorbidities, race/ethnicity, diet quality, and postdiagnosis physical activity, WC was positively associated with all-cause mortality (HR(q4:q1): 2.99, 95 % CI 1.14, 7.86) but its positive association with breast cancer-specificmortality was not statistically significant (HR(q4:q1): 2.69, 95 % CI 0.69, 12.01). WHR was positively associated with all-cause mortality (HR(q4:q1): 2.10, 95 % CI 1.08, 4.05) and breast cancer-specific mortality (HR(q4:q1): 4.02, 95 % CI 1.31, 12.31). After adjustment for homeostatic model assessment (HOMA) score and C-reactive protein, risk estimates were attenuated and not statistically significant. In this diverse breast cancer survivor cohort, postdiagnosis WC and WHR were associated with all-cause mortality. Insulin resistance and inflammation may mediate the effects of central adiposity on mortality among breast cancer patients.

PURPOSE: A comprehensive understanding of the role of modifiable health behaviors in effective management of cancer-related fatigue is needed. Among breast cancer survivors, we examined how postdiagnosis diet quality, independently and jointly with physical activity, is related to fatigue, and the potential mediating role of inflammation. METHODS: 770 women diagnosed with stage 0-IIIA breast cancer in the Health, Eating, Activity, and Lifestyle study completed food frequency and physical activity questionnaires 30-months postdiagnosis. We scored diet quality using the Healthy Eating Index-2010 (HEI-2010). Serum concentrations of C-reactive protein (CRP) were measured in fasting 30-ml blood samples. Multidimensional fatigue was measured 41-months postdiagnosis using the 22-item revised Piper Fatigue Scale. In multivariate linear models, we determined whether fatigue was associated HEI-2010 quartiles (Q1-Q4), and a variable jointly reflecting HEI quartiles and physical activity levels. RESULTS: Survivors with better quality diets (Q4 vs. Q1) had lower total fatigue (4.1 vs. 4.8, p-contrast=0.003) and subscale scores (behavioral severity: 3.4 vs. 4.2, p-contrast=0.003; affective meaning: 3.9 vs. 4.8, p-contrast=0.007; sensory: 4.4 vs. 5.2, p-contrast=0.003; cognitive: 4.6 vs. 5.0, p-contrast=0.046). Least squares estimates of fatigue were similar in models including CRP. Compared to survivors with poor quality diets and no physical activity, survivors with better quality diets and meeting physical activity recommendations had significantly lower behavioral severity (3.2 vs. 4.7, p-contrast=0.002) and sensory (3.8 vs. 4.8. p-contrast=0.006) fatigue scores. CONCLUSION: In this large breast cancer survivor cohort, postdiagnosis diet quality was inversely and independently associated with fatigue. IMPLICATIONS: Future interventions designed to improve multiple energy balance behaviors can provide insight into their associations with fatigue.

Author(s): Parsons, Helen M; Schmidt, Susanne; Harlan, Linda C; Kent, Erin E; Lynch, Charles F; Smith, Ashley W; Keegan, Theresa HM; AYA HOPE Collaborative | Abstract: BackgroundYoung adults have historically been the least likely to have health insurance in the United States. Previous studies of survivors of childhood cancer found lower rates of insurance and less access to medical care compared with siblings; however, to the authors' knowledge, no studies to date have examined continuity of insurance after a cancer diagnosis in adolescents and young adults (AYAs).MethodsUsing the AYA Health Outcomes and Patient Experience study, a cohort of 465 individuals aged 15 to 39 years from participating Surveillance, Epidemiology, and End Results registries, we evaluated changes in and sponsors of health insurance coverage after diagnosis, coverage of physician-recommended tests, and factors associated with lack of insurance after a cancer diagnosis using chi-square tests and multivariable logistic regression.ResultsGreater than 25% of AYA survivors of cancer (118 survivors) experienced some period without insurance up to 35 months after diagnosis. Insurance rates were high in the initial year after diagnosis (6 months-14 months; 93.3%) but decreased substantially at follow-up (15 months-35 months; 85.2%). The most common sponsor of health insurance was employer/school coverage (43.7%). Multivariable analysis indicated that older survivors (those aged 25-39 years vs 15-19 years; odds ratio, 3.35 [P l .01]) and those with less education (high school or less vs college graduate; odds ratio, 2.80 [P l .01]) were more likely to experience a period without insurance after diagnosis. Furthermore, g 20% of survivors indicated there were physician-recommended tests/treatments that were not covered by insurance, but g 80% received them regardless of coverage.ConclusionsInsurance rates appear to decrease with time since diagnosis in AYA survivors of cancer. Future studies should examine how new policies under the Patient Protection and Affordable Care Act extend access and insurance coverage beyond initial treatment.

Adolescents (aged 15–19 years) have not experienced the same survival gains as children and older adults diagnosed with cancer. Poor clinical trial enrollment and adherence rates among adolescents may account for some of this disparity. Although biological, regulatory, systemic, and practice-related challenges to clinical trial enrollment and adherence have been examined, studies of psychosocial factors, which can serve as barriers or facilitators to enrollment and adherence, are limited. To bring attention to these psychological factors, we reviewed existing literature on psychosocial barriers and facilitators that can affect an adolescent’s decision to enroll and adhere to a clinical trial. We also provide potential strategies to address psychosocial factors affecting clinical trial accrual and adherence.

Adolescent and young adult cancer survivors—those who were ages 15–39 at their first cancer diagnosis—have important health limitations. These survivors are at risk for higher health care expenditures and lost productivity, compared to adults without a history of cancer. Using Medical Expenditure Panel Survey data, we present nationally representative estimates of the economic burden among people who were diagnosed with cancer in adolescence or young adulthood. Our findings demonstrate that surviving cancer at this age is associated with a substantial economic burden. Compared to adults without a history of cancer, adolescent and young adult cancer survivors had excess annual medical expenditures of $3,170 per person and excess annual productivity losses of $2,250 per person. Multifaceted prevention strategies, including education and sustained intervention programs to ensure access to lifelong risk-based follow-up care, may be effective ways to improve the economic outcomes associated with cancer survivorship in this population.

215 Background: Over 161,000 new prostate cancer patients diagnosed annually, with 75% diagnosed at early stages. Limited evidence exists supporting choice of treatment (including radical prostatectomy, radiation therapy, hormonal therapy, active surveillance or watchful waiting) for localized prostate cancer. Treatments have varying side effects associated with impaired functional status and health-related quality of life. Patient care experiences are important quality indicators, but research examining patient experiences by prostate cancer treatment is limited. The purpose of this study was to examine the association between treatment received (surgery, radiation, or no treatment) and CAHPS ratings of overall care over the prior six months. Methods: This study used data from SEER-CAHPS, which links Surveillance, Epidemiology, and End Results (SEER) data with Medicare Consumer Assessment of Healthcare Providers and Systems (CAHPS) patient experience survey and Medicare claims data. Medicare Fee-for-Service beneficiaries ≥65 years with a National Comprehensive Cancer Network (NCCN) low- or intermediate-risk prostate cancer diagnosis were assigned to surgery only, radiation only, and no treatment received groups for analysis. The outcome variable was a CAHPS rating of overall care (0 = worst; 10 = best). The analysis adjusted for case mix and other cancer-specific variables. Results: The final cohort included 507 prostate cancer survivors (surgery n = 109 [21%]; radiation n = 197 [39%]; no treatment n = 201 [40%]). Respondents who received radiation rated their overall care higher than those not receiving treatment (adjusted mean 8.9 vs 8.3; p= 0.02). Ratings did not differ significantly between the surgery and no treatment groups. Conclusions: This study represents a first look at patient experiences among localized prostate cancer survivors receiving surgery, radiation, or no treatment. It is not clear whether those who did not receive treatment chose active surveillance or watchful waiting, or whether they did not have access to care, which could have affected results. Future research should explore associations between receipt of treatment and patient care experiences in an adequately powered sample to inform future interventions.

PurposeDocumenting the impact of different types of cancer on daily functioning and well-being is important for understanding burden relative to other chronic medical conditions. This study examined the impact of 10 different cancers and 13 other chronic medical conditions on health-related quality of life.MethodsHealth-related quality of life data were gathered on the Medicare Health Outcomes Survey (MHOS) between 1998 and 2002. Cancer information was ascertained using the National Cancer Institute's surveillance, epidemiology, and end results program and linked to MHOS data.ResultsThe average SF-6D score was 0.73 (SD = 0.14). Depressive symptoms had the largest unique association with the SF-6D, followed by arthritis of the hip, chronic obstructive pulmonary disease/asthma, stroke, and sciatica. In addition, the majority of cancer types were significantly associated with the SF-6D score, with significant negative weights ranging from -0.01 to -0.02 on the 0-1 health utility scale. Distant stage of cancer was associated with large decrements in the SF-6D ranging from -0.04 (prostate) to -0.08 (female breast).ConclusionA large number of chronic conditions, including cancer, are associated uniquely with decrements in health utility. The cumulative effects of comorbid conditions have substantial impact on daily functioning and well-being of Medicare beneficiaries.

Purpose: Limited research exists on the social information needs of adolescents and young adults (AYAs, aged 15–39 at diagnosis) with cancer. Methods: The Adolescent and Young Adult Health Outcomes and Patient Experiences (AYA HOPE) Study recruited 523 patients to complete surveys 6–14 months after cancer diagnosis. Participants reported information needs for talking about their cancer experience with family and friends (TAC) and meeting peer survivors (MPS). Multiple logistic regression was used to examine factors associated with each need. Results: Approximately 25% (118/477) and 43% (199/462) of participants reported a TAC or MPS need respectively. Participants in their 20s (vs. teenagers) were more likely to report a MPS need (p=0.03). Hispanics (vs. non-Hispanic whites) were more likely to report a TAC need (p=0.01). Individuals who did not receive but reported needing support groups were about 4 and 13 times as likely to report TAC and MPS needs respectively (p

Background: Physical activity is associated with reduced mortality and higher quality of life in breast cancer survivors; however, limited data on the prevalence of activity and long-term trends after diagnosis are available. Methods: A multiethnic cohort of 631 women (18–64 years) with stage 0 to IIIA breast cancer was followed for 10 years. Recreational aerobic activity (MET-h/wk) was ascertained for the year before diagnosis (baseline), 24 months, 5 years, and 10 years after enrollment. Women were classified according to U.S. physical activity guidelines (≥150 min/wk moderate or ≥75 min/wk vigorous activity). The OR for meeting guidelines at 5 and 10 years according to baseline factors was estimated using logistic regression. The change in MET-h/wk was predicted using linear regression. Results: Prediagnosis, 34% of women met physical activity guidelines; 34.0%, 39.5%, and 21.4% met guidelines at 24 months, 5 years, and 10 years after enrollment, respectively. Less than 8% of survivors met guidelines at all follow-up periods. Over 10 years, recreational aerobic activity decreased by a mean ± SD of 4.3 ± 16.2 MET-h/wk. Meeting guidelines pre-diagnosis was strongly associated with meeting guidelines at 5 years [OR (95% confidence interval; CI): 2.76 (1.85–4.1)] and 10 years [OR (95% CI): 3.35 (2.13–5.28)]. No other demographic or prognostic factors were significantly associated with the 10-year change in MET-h/wk. Conclusion: The vast majority of early breast cancer survivors do not meet national exercise recommendations 10 years postdiagnosis. Impact: Physical activity levels are low in breast cancer survivors across the 10 years postdiagnosis; nonetheless, the predictors of activity in this population remain poorly understood. Cancer Epidemiol Biomarkers Prev; 22(6); 1153–61. ©2013 AACR.

PURPOSE: To empirically determine clinically meaningful cut-scores on the 0-10 response scale of the revised Piper Fatigue Scale (PFS-R) and its shorter version (PFS-12). Breast cancer survivors were classified (i.e., none, mild, moderate, or severe fatigue) based on the cut-scores, and relationships between these cut-scores and decrements in health-related quality of life (HRQOL) were examined. METHODS: A total of 857 breast cancer survivors, stages in situ-IIIa, from the Health, Eating, Activity, and Lifestyle (HEAL) Study were eligible. Survivors completed the PFS-R, SF-36, and a sexual health scale approximately 3 years after diagnosis. Multivariate analysis of covariance was used to examine five fatigue severity cut-score models, controlling for demographics, clinical characteristics, comorbidity, and antidepressant use. Multivariate regression was used to examine HRQOL decrements by cut-score category. RESULTS: Analyses supported two similar fatigue severity cut-score models for the PFS-R and PFS-12: Model A.) none (0), mild (1-3), moderate (4-6), and severe (7-10); and Model D.) none (0), mild (1-2), moderate (3-5), and severe (6-10). For every threshold increase in fatigue severity, clinically meaningful decrements in physical, mental, and sexual health scores were observed, supporting construct validity of the fatigue cut-scores. CONCLUSION: Standardized fatigue cut-scores may enhance interpretability and comparability across studies and populations and guide treating planning.

Use of complementary and alternative medicine (CAM) is common among breast cancer patients, but less is known about whether CAM influences breast cancer survival. Health Eating, Activity, and Lifestyle (HEAL) Study participants (n = 707) were diagnosed with stage I–IIIA breast cancer. Participants completed a 30-month post-diagnosis interview including questions on CAM use (natural products such as dietary and botanical supplements, alternative health practices, and alternative medical systems), weight, physical activity, and comorbidities. Outcomes were breast cancer-specific and total mortality, which were ascertained from the Surveillance Epidemiology and End Results registries in Western Washington, Los Angeles County, and New Mexico. Cox proportional hazards regression models were fit to data to estimate hazard ratios (HR) and 95 % confidence intervals (CI) for mortality. Models were adjusted for potential confounding by sociodemographic, health, and cancer-related factors. Among 707 participants, 70 breast cancer-specific deaths and 149 total deaths were reported. 60.2 % of participants reported CAM use post-diagnosis. The most common CAM were natural products (51 %) including plant-based estrogenic supplements (42 %). Manipulative and body-based practices and alternative medical systems were used by 27 and 13 % of participants, respectively. No associations were observed between CAM use and breast cancer-specific (HR 1.04, 95 % CI 0.61–1.76) or total mortality (HR 0.91, 95 % CI 0.63–1.29). Complementary and alternative medicine use was not associated with breast cancer-specific mortality or total mortality. Randomized controlled trials may be needed to definitively test whether there is harm or benefit from the types of CAM assessed in HEAL in relation to mortality outcomes in breast cancer survivors.

Purpose To examine the impact of cancer on work and education in a sample of adolescent and young adult (AYA) patients with cancer. Patients and Methods By using the Adolescent and Young Adult Health Outcomes and Patient Experience Study (AYA HOPE)—a cohort of 463 recently diagnosed patients age 15 to 39 years with germ cell cancer, Hodgkin's lymphoma, non-Hodgkin's lymphoma, sarcoma, and acute lymphocytic leukemia from participating Surveillance, Epidemiology, and End Results (SEER) cancer registries—we evaluated factors associated with return to work/school after cancer diagnosis, a belief that cancer had a negative impact on plans for work/school, and reported problems with work/school after diagnosis by using descriptive statistics, χ2 tests, and multivariate logistic regression. Results More than 72% (282 of 388) of patients working or in school full-time before diagnosis had returned to full-time work or school 15 to 35 months postdiagnosis compared with 34% (14 of 41) of previously part-time workers/students, 7% (one of 14) of homemakers, and 25% (five of 20) of unemployed/disabled patients (P < .001). Among full-time workers/students before diagnosis, patients who were uninsured (odds ratio [OR], 0.21; 95% CI, 0.07 to 0.67; no insurance v employer-/school-sponsored insurance) or quit working directly after diagnosis (OR, 0.15; 95% CI, 0.06 to 0.37; quit v no change) were least likely to return. Very intensive cancer treatment and quitting work/school were associated with a belief that cancer negatively influenced plans for work/school. Finally, more than 50% of full-time workers/students reported problems with work/studies after diagnosis. Conclusion Although most AYA patients with cancer return to work after cancer, treatment intensity, not having insurance, and quitting work/school directly after diagnosis can influence work/educational outcomes. Future research should investigate underlying causes for these differences and best practices for effective transition of these cancer survivors to the workplace/school after treatment.

Objective To assess primary care physicians' (PCPs) knowledge of energy balance related guidelines and the association with sociodemographic characteristics and clinical care practices. Method As part of the 2008 U.S. nationally representative National Survey of Energy Balance Related Care among Primary Care Physicians (EB-PCP), 1776 PCPs from four specialties who treated adults ( n = 1060) or children and adolescents ( n = 716) completed surveys on sociodemographic information, knowledge of energy balance guidelines, and clinical care practices. Results EB-PCP response rate was 64.5%. For PCPs treating children, knowledge of guidelines for healthy BMI percentile, physical activity, and fruit and vegetables intake was 36.5%, 27.0%, and 62.9%, respectively. For PCPs treating adults, knowledge of guidelines for overweight, obesity, physical activity, and fruit and vegetables intake was 81.4%, 81.3%, 70.9%, and 63.5%, respectively. Generally, younger, female physicians were more likely to exhibit correct knowledge. Knowledge of weight-related guidelines was associated with assessment of body mass index (BMI) and use of BMI-for-age growth charts. Conclusion Knowledge of energy balance guidelines among PCPs treating children is low, among PCPs treating adults it appeared high for overweight and obesity-related clinical guidelines and moderate for physical activity and diet, and was mostly unrelated to clinical practices among all PCPs.

Purpose Evidence suggests that inflammation may drive fatigue in cancer survivors. Research in healthy populations has shown reduced inflammation with higher dietary intake of ω-3 polyunsaturated fatty acids (PUFAs), which could potentially reduce fatigue. This study investigated fatigue, inflammation, and intake of ω-3 and ω-6 PUFAs among breast cancer survivors. Methods Six hundred thirty-three survivors (mean age, 56 years; stage I to IIIA) participating in the Health, Eating, Activity, and Lifestyle Study completed a food frequency/dietary supplement questionnaire and provided a blood sample assayed for C-reactive protein (CRP) and serum amyloid A (30 months after diagnosis) and completed the Piper Fatigue Scale and Short Form-36 (SF-36) vitality scale (39 months after diagnosis). Analysis of covariance and logistic regression models tested relationships between inflammation and fatigue, inflammation and ω-3 and ω-6 PUFA intake, and PUFA intake and fatigue, controlling for three incremental levels of confounders. Fatigue was analyzed continuously (Piper scales) and dichotomously (SF-36 vitality ≤ 50). Results Behavioral (P = .003) and sensory (P = .001) fatigue scale scores were higher by increasing CRP tertile; relationships were attenuated after adjustment for medication use and comorbidity. Survivors with high CRP had 1.8 times greater odds of fatigue after full adjustment (P < .05). Higher intake of ω-6 relative to ω-3 PUFAs was associated with greater CRP (P = .01 after full adjustment) and greater odds of fatigue (odds ratio, 2.6 for the highest v lowest intake; P < .05). Conclusion Results link higher intake of ω-3 PUFAs, decreased inflammation, and decreased physical aspects of fatigue. Future studies should test whether ω-3 supplementation may reduce fatigue among significantly fatigued breast cancer survivors.

To investigate whether the association between physical activity and serum 25-hydroxyvitamin D (25(OH)D) concentrations is independent of sun exposure, body size, and other potential explanatory variables.By using data from a sample of 1343 postmenopausal women from the Women's Health Initiative, we used linear regression to examine the associations of duration (minutes/week) of recreational activity and of yard work with 25(OH)D concentrations (nmol/L).In age-adjusted analyses, positive associations were observed between 25(OH)D concentrations and both duration of recreational physical activity (β = 0.71, SE [0.09], p.001) and yard work (β = 0.36, SE [0.10], p = .004). After further adjustment for vitamin D intake, self-reported sunlight exposure, waist circumference, and season of blood draw, 25(OH)D was significantly associated with recreational activity (β = 0.21, SE [0.09], p = .014) but not with yard work (β = 0.18, SE [0.09], p = .061). Interactions were observed between season and both recreational activity (P(interaction) = .082) and yard work (P(interaction) = .038) such that these activity-25(OH)D associations were greater during summer/fall compared with winter/spring. Self-reported sunlight exposure and measures of body size did not modify the associations.The observed age-adjusted activity-25(OH)D associations were attenuated after adjusting for explanatory variables and were modified by season of blood draw. Adopting a lifestyle that incorporates outdoor physical activity during summer/fall, consuming recommended amounts of vitamin D, and maintaining a healthy weight may improve or maintain vitamin D status in postmenopausal women.

Sleep duration among breast cancer survivors correlates with fatigue, depression, and health-related quality of life (HRQOL); however, this has not been studied longitudinally. This study investigated patterns of sleep duration change across the early breast cancer survivorship period, their demographic and clinical predictors, and their relationships with subsequent cancer-related symptoms and HRQOL. Breast cancer survivors (n = 572), were assessed 6 months post-diagnosis (current sleep & retrospective reports of pre-diagnosis sleep), 30 months post-diagnosis (sleep), and 39 months post-diagnosis (symptoms, HRQOL). Sleep duration change was determined by examining sleep at each time point in relation to published norms. Analysis of variance and logistic regression models tested demographic and clinical differences between the sleep change groups; linear regression models tested differences in symptoms and HRQOL. Half of the survivors reported no sleep duration change over time; however, 25% reported sleep changes indicating a temporary (5.6%), late-occurring (14%), or sustained (5.9%) change. Survivors reporting sustained or temporary sleep changes were more likely to have been treated with chemotherapy (OR = 2.62, P

Purpose To examine the association between serum C-peptide, a marker of insulin secretion, measured 3 years after a breast cancer diagnosis, and death resulting from all causes and breast cancer. Patients and Methods This was a prospective, observational study of 604 women enrolled onto the Health, Eating, Activity, and Lifestyle (HEAL) Study who were diagnosed with local or regional breast cancer between 1995 and 1998 and observed until death or December 31, 2006, whichever came first. The hazard ratio (HR) for all deaths and deaths owing to breast cancer and 95% CIs for the HR were estimated using multivariable stratified Cox regression analyses. Results Among women without type 2 diabetes, fasting C-peptide levels were associated with an increased risk of death resulting from all causes and from breast cancer. A 1-ng/mL increase in C-peptide was associated with a 31% increased risk of any death (HR = 1.31; 95% CI, 1.06 to 1.63; P = .013) and a 35% increased risk of death as a result of breast cancer (HR = 1.35; 95% CI, 1.02 to 1.87, P = .048). Associations between C-peptide levels and death as a result of breast cancer were stronger in certain subgroups, including women with type 2 diabetes, women with a body mass index less than 25 kg/m2, women diagnosed with a higher stage of disease, and women whose tumors were estrogen receptor positive. Conclusion Treatment strategies to reduce C-peptide levels in patients with breast cancer, including dietary-induced weight loss, physical activity, and/or use of insulin-lowering medications, should be explored.

Purpose Overweight or obese breast cancer patients have a worse prognosis compared with normal-weight patients. This may be attributed to hyperinsulinemia and dysregulation of adipokine levels associated with overweight and obesity. Here, we evaluate whether low levels of adiponectin and a greater level of insulin resistance are associated with breast cancer mortality and all-cause mortality. Patients and Methods We measured glucose, insulin, and adiponectin levels in fasting serum samples from 527 women enrolled in the Health, Eating, Activity, and Lifestyle (HEAL) Study, a multiethnic, prospective cohort study of women diagnosed with stage I-IIIA breast cancer. We evaluated the association between adiponectin and insulin and glucose levels (expressed as the Homeostatic Model Assessment [HOMA] score) represented as continuous measures and median split categories, along with breast cancer mortality and all-cause mortality, using Cox proportional hazards models. Results Increasing HOMA scores were associated with reduced breast cancer survival (hazard ratio [HR], 1.12; 95% CI, 1.05 to 1.20) and reduced all-cause survival (HR, 1.09; 95% CI, 1.02 to 1.15) after adjustment for possible confounders. Higher levels of adiponectin (above the median: 15.5 μg/mL) were associated with longer breast cancer survival (HR, 0.39; 95% CI, 0.15 to 0.95) after adjustment for covariates. A continuous measure of adiponectin was not associated with either breast cancer–specific or all-cause mortality. Conclusion Elevated HOMA scores and low levels of adiponectin, both associated with obesity, were associated with increased breast cancer mortality. To the best of our knowledge, this is the first demonstration of the association between low levels of adiponectin and increased breast cancer mortality in breast cancer survivors.

14 Background: Cancer patients often have multiple chronic conditions and require complex care coordination. We compared older (ages 66+) cancer patients’ reports of their healthcare experiences based on level of multimorbidity. Methods: Data from the SEER-CAHPS combines cancer registry (Surveillance, Epidemiology, and End Results; SEER), patient experiences (Consumer Assessment of Healthcare Providers and Systems; CAHPS) and Medicare claims data. Multimorbidity was captured as: (1) the National Cancer Institute-Combined Comorbidity Index (NCCI, 16 Charlson conditions diagnosed ≤12 months prior to cancer); and (2) a Multimorbidity Burden Index (MBI), which categorizes conditions based on the impact to cancer treatment (no comorbidity, low/medium, and high). Outcomes were CAHPS patient experience measures: Doctor Communication, Getting Care Quickly, Getting Needed Care, Obtaining Prescription Drugs, Customer Service, and ratings of Overall Care, Personal Doctor, and Specialist. Multivariable linear regression provided associations of each multimorbidity measure with CAHPS measures controlling for standard case mix adjustors, years from diagnosis to survey and diagnostic stage. Results: The study cohort included 9305 cancer patients (53% male, 84% Non-Hispanic White, average age 77, average time from diagnosis 29 months), with a distribution of NCCI conditions as: 0 (cancer only), 73%; 1, 17%; ≥2, 10%. Cancer patients with NCCI = 0 and those with MBI = no comorbidity rated their Personal Doctor more negatively than those with any comorbidities ( p < 0.02). Those with NCCI ≥ 2 or MBI = low/medium reported better Doctor Communication ( p < 0.04). Those with high MBI rated their specialist physician better than those with no multimorbidity ( p = 0.04), and those with low/medium MBI reported better experiences Getting Care Quickly ( p = 0.02). No other associations were significant. Conclusions: Cancer patients with multimorbidity report better communication with their doctor and care = by = personal doctors and specialists. Increased attention to the care experiences of cancer patients with multimorbidity may lead to insights and interventions that benefit all cancer patients.

Purpose: To examine associations between recreational physical activity and quality of life (QOL) in a multiethnic cohort of breast cancer survivors, specifically testing whether associations are consistent across racial/ethnic groups after accounting for relevant medical and demographic factors that might explain disparities in QOL outcomes. Methods: Data were collected from a population-based cohort of non-Hispanic White (n = 448), Black (n = 197), and Hispanic (n = 84) breast cancer survivors (stage 0-IIIa) in the Health, Eating, Activity, and Lifestyle Study. Physical activity was assessed ∼2.5 years after breast cancer diagnosis, with QOL assessed on average 6 to 12 months later. We used structural equation modeling to examine relationships between meeting recommended levels of physical activity and QOL, stratifying by race/ethnicity and adjusting for other demographic, comorbidity, and treatment effects. Results: Structural equation modeling indicated that meeting recommended levels of physical activity had significant positive associations with QOL for Black and non-Hispanic White women (P < 0.05). Fewer Black women reported meeting recommended physical activity levels (P < 0.001), but meeting recommendations was associated with better QOL. Post hoc tests showed that meeting physical activity recommendations was specifically associated with better vitality, social functioning, emotional roles, and global QOL (P < 0.05 for all). Conclusions: These results suggest that meeting recommended levels of physical activity is associated with better QOL in non-Hispanic White and Black breast cancer survivors. Findings may help support future interventions among breast cancer survivors and promote supportive care that includes physical activity, although more research is needed to determine these relationships among Hispanic and other ethnic minority women. (Cancer Epidemiol Biomarkers Prev 2009;18(2):656–63)

Purpose To investigate the association between pre- and postdiagnosis physical activity (as well as change in prediagnosis to postdiagnosis physical activity) and mortality among women with breast cancer. Patients and Methods This was a prospective observational study of 933 women enrolled onto the Health, Eating, Activity, and Lifestyle Study who were diagnosed with local or regional breast cancer between 1995 and 1998 and observed until death or September 2004, whichever came first. The primary outcomes measured were total deaths and breast cancer deaths. The primary exposures were physical activity in the year before and 2 years after diagnosis and the pre- to postdiagnosis change in physical activity. Results Compared with inactive women, the multivariable hazard ratios (HRs) for total deaths for women expending at least 9 metabolic equivalent hours per week (approximately 2 to 3 h/wk of brisk walking) were 0.69 (95% CI, 0.45 to 1.06; P = .045) for those active in the year before diagnosis and 0.33 (95% CI, 0.15 to 0.73; P = .046) for those active 2 years after diagnosis. Compared with women who were inactive both before and after diagnosis, women who increased physical activity after diagnosis had a 45% lower risk of death (HR = 0.55; 95% CI, 0.22 to 1.38), and women who decreased physical activity after diagnosis had a four-fold greater risk of death (HR = 3.95; 95% CI, 1.45 to 10.50). Conclusion Moderate-intensity physical activity after a diagnosis of breast cancer may improve prognosis.

This paper describes the ethnic and socioeconomic correlates of functioning in a cohort of long-term nonrecurring breast cancer survivors. Participants (n = 804) in this study were women from the Health, Eating, Activity, and Lifestyle (HEAL) Study, a population-based, multicenter, multiethnic, prospective study of women newly diagnosed with in situ or Stages I to IIIA breast cancer. Measurements occurred at three timepoints following diagnosis. Outcomes included standardized measures of functioning (MOS SF-36). Overall, these long-term survivors reported values on two physical function subscales of the SF-36 slightly lower than population norms. Black women reported statistically significantly lower physical functioning (PF) scores (P = 0.01), compared with White and Hispanic women, but higher mental health (MH) scores (P

Physicians play a critical role in delivering effective treatment and enabling successful transition to survivorship among adolescent and young adult (AYA) cancer patients. However, with no AYA cancer medical specialty, information on where and by whom AYAs with cancer are treated is limited.Using the National Cancer Institute's population-based AYA HOPE Study, 464 AYAs aged 15-39 at diagnosis treated by 903 physicians were identified. Differences in physician and hospital characteristics were examined by age at diagnosis and cancer type (germ cell cancer, non-Hodgkin lymphoma, Hodgkin lymphoma, acute lymphocytic leukemia [ALL], and sarcoma) using chi-square tests.Treating physicians were predominately 51-64 years old, male, United States-trained in non-pediatric specialties, and in group practices within large metropolitan areas. Older patients were less often treated by pediatric physicians (p0.01) and more likely to be treated by United States-trained physicians without research/teaching responsibilities and in hospitals without residency programs (p0.05). The majority of the few pediatricians (n = 44) treated ALL patients. Physicians with research/teaching responsibilities and those based in medical schools were more likely to treat patients with ALL and sarcoma compared with other cancer types (p0.01). Of HL patients, 73% were treated at a cancer center compared with 56% of patients with germ cell cancer (p0.01), while ALL (85%) and sarcoma (87%) patients were more likely to be treated in hospitals with residency programs (p0.01).Most AYAs with cancer were treated by non-pediatric physicians in community settings, although physician characteristics varied significantly by patient cancer type and age at diagnosis.

PurposeTo evaluate the validity of the Patient-Reported Outcomes Measurement Information System (PROMIS) physical function measures in a diverse, population-based cancer sample.MethodsCancer patients 6-13 months post-diagnosis (n = 4840) were recruited for the Measuring Your Health study. Participants were diagnosed between 2010 and 2013 with non-Hodgkin lymphoma or cancers of the colorectum, lung, breast, uterus, cervix, or prostate. Four PROMIS physical function short forms (4a, 6b, 10a, and 16) were evaluated for validity and reliability across age and race-ethnicity groups. Covariates included gender, marital status, education level, cancer site and stage, comorbidities, and functional status.ResultsPROMIS physical function short forms showed high internal consistency (Cronbach's α = 0.92-0.96), convergent validity (fatigue, pain interference, FACT physical well-being all r ≥ 0.68), and discriminant validity (unrelated domains all r ≤ 0.3) across survey short forms, age, and race-ethnicity. Known-group differences by demographic, clinical, and functional characteristics performed as hypothesized. Ceiling effects for higher-functioning individuals were identified on most forms.ConclusionsThis study provides strong evidence that PROMIS physical function measures are valid and reliable in multiple race-ethnicity and age groups. Researchers selecting specific PROMIS short forms should consider the degree of functional disability in their patient population to ensure that length and content are tailored to limit response burden.

Cancer is the leading disease-related cause of death in adolescents and young adults (AYAs). This population faces many short- and long-term health and psychosocial consequences of cancer diagnosis and treatment, but many programs for cancer treatment, survivorship care, and psychosocial support do not focus on the specific needs of AYA cancer patients. Recognizing this health care disparity, the National Cancer Policy Forum of the Institute of Medicine convened a public workshop to examine the needs of AYA patients with cancer. Workshop participants identified many gaps and challenges in the care of AYA cancer patients and discussed potential strategies to address these needs. Suggestions included ways to improve access to care for AYAs, to deliver cancer care that better meets the medical and psychosocial needs of AYAs, to develop educational programs for providers who care for AYA cancer survivors, and to enhance the evidence base for AYAs with cancer by facilitating participation in research.

6595 Background: Care experience ratings are recognized as measures of healthcare quality. Here we introduce a new, public data resource, SEER-CAHPS, which links cancer registry data from the National Cancer Institute’s Surveillance, Epidemiology and End Results (SEER) program with Medicare claims and the Medicare Consumer Assessment of Healthcare Providers and Systems (MCAHPS) survey. Methods: The SEER-CAHPS resource includes cancer registry data from 1973-2011 (diagnosis, incidence, mortality, and sociodemographic data), Medicare CAHPS survey data from 1998-2013 (sociodemographic, health status, and care experience ratings), and Medicare fee-for-service (FFS) claims data from 2002-2013. The survey includes global ratings of overall care, personal doctor, specialist, health plan, and prescription drug plans, and composite ratings of doctor communication, care coordination, getting needed care, and getting care quickly. Data also contain survey weights to account for the Medicare CAHPS sampling design. Cross-sectional and longitudinal analyses are possible. Results: Currently, SEER-CAHPS includes 205,339 individuals with a history of cancer documented in SEER (FFS: 26,802 with a survey before cancer diagnosis, and 55,231 with a survey after cancer diagnosis; Medicare Advantage [MA]: 57,227 with a survey before cancer diagnosis and 71,436 with a survey after cancer diagnosis). The data resource also includes 724,965 MCAHPS respondents without cancer in SEER regions (FFS: 282,592; MA: 447,358). The data provide insights on topics including experiences of cancer patients in their last year of life; experiences of cancer survivors; and the associations of guideline-concordant follow-up care with patient experiences among cancer survivors. We will demonstrate project sample-size estimation and present instructions for submitting data access applications. Conclusions: SEER-CAHPS, a new, publicly available resource, provides population-based, cancer-specific data on patient experiences, health outcomes and healthcare utilization.

Summary Background Overweight and obesity are major health risks in the United States (US) and primary care physicians (PCPs) are uniquely positioned to address them. However, their personal beliefs about weight-related care may influence their delivery of care. Methods A nationally representative sample of 2022 physicians completed the National Survey of Energy Balance-Related Care among Primary Care Physicians. Physicians responded to questions regarding their beliefs and clinical practices associated with weight control including assessment, counselling, referral and follow-up for diet, physical activity, and weight. Multivariate logistic regression was used to examine associations between physician characteristics and personal beliefs, and associations between personal beliefs and care delivery, adjusting for specialty, age, gender, race, region, urban/rural location, and patient population. Results Most physicians feel a responsibility (97%) to promote weight-related care, but over half (53%) have concerns about their effectiveness and almost two-thirds feel they lack effective strategies to help patients (63%). Demographics and medical specialty were associated with beliefs (female, Asian-American, Midwest and Southern location, and internal medicine physicians were more likely to have stronger positive beliefs about weight-related care). Personal beliefs about weight-related care were associated with the likelihood of its delivery. However, two practices, regular BMI assessment and referring patients for further evaluation and management, were less related to PCP beliefs than were other care practices. Conclusions PCPs’ beliefs may be important to their practice of weight-related care. Training in behavioural counselling, and providing physician's tools and resources may help to address their concerns about helping patients with weight-related care.

10086 Background: Young adults have historically been the least likely to have health insurance in the United States. Previous studies of childhood cancer survivors found lower rates of insurance a...

Introduction Lymphedema is a potentially debilitating condition that occurs among breast cancer survivors. This study examines the incidence of self-reported lymphedema, timing of lymphedema onset, and associations between sociodemographic, clinical and lifestyle factors and lymphedema risk across racial-ethnic groups using data from a multicenter, multiethnic prospective cohort study of breast cancer survivors, the Health, Eating, Activity and Lifestyle Study. Methods A total of 666 women diagnosed with breast cancer staged as in situ, localized or regional disease at ages 35 to 64 years were recruited through the Surveillance, Epidemiology, and End Results registries in New Mexico (non-Hispanic white and Hispanic white), Los Angeles County (black), and Western Washington (non-Hispanic white) and followed for a median of 10.2 years. We evaluated sociodemographic factors, breast cancer- and treatment-related factors, comorbidities, body mass index (BMI), hormonal factors, and lifestyle factors in relation to self-reported lymphedema by fitting Cox proportional hazards models, estimating hazard ratios (HR) and 95% confidence intervals (CI). Results Over the follow-up period, 190 women (29%) reported lymphedema. The median time from breast cancer diagnosis to onset of lymphedema was 10.5 months (range: 0.5 to 134.9 months). Factors independently associated with lymphedema were total/modified radical mastectomy (versus partial/less than total mastectomy; HR = 1.37, 95% CI: 1.01 to 1.85), chemotherapy (versus no chemotherapy; HR = 1.48, 95% CI: 1.09 to 2.02), no lymph nodes removed (versus ≥10 lymph nodes removed; HR = 0.17, 95% CI: 0.08 to 0.33), pre-diagnostic BMI ≥30 kg/m2 (versus BMI

As part of the National Cancer Institute's AYA HOPE study, 296 adolescent and young adults (AYAs) completed an open-ended survey item asking them to describe their medical care or experience with cancer. Patient, provider, and system-level characteristics all appear to influence AYAs' perceptions of their medical care. Participants attributed levels of satisfaction with care to the availability and communication of information, the management of side-effects, and the expediency and flexibility of treatments. Struggles with health insurance and finances were evident. Findings contribute to a better understanding of AYAs' cancer treatment experiences and will inform improvements to oncology care for this population.

Adolescent and young adult (AYA) cancer survivors experience barriers to utilizing healthcare, but the determinants of cancer-related medical care of AYAs has not been fully explored.We studied factors associated with medical care utilization among 465 AYA cancer survivors in the AYA Health Outcomes and Patient Experience Study, a cohort of 15 to 39 year olds recently diagnosed with germ cell cancer, lymphoma, sarcoma, or acute lymphocytic leukemia. Descriptive statistics and multivariate logistic regression methods were used.Most AYA cancer survivors (95%), who were 15-35 months post diagnosis, received medical care in the past 12 months and 17% were undergoing cancer treatment. In multivariate analyses, compared with AYAs with no cancer-related medical visits in the previous year, AYAs receiving cancer-related care were more likely to currently have health insurance (odds ratio (OR) = 4.9; 95% confidence interval (CI) = 1.7-13.8) or have had health insurance in the past year (OR = 4.0; 95% CI = 0.99-16.3). Cancer recurrence, lacking employment, and negative changes in self-reported general health were associated with ongoing cancer treatment versus other cancer-related medical care. Eleven percent of all AYAs and 25% of AYAs who did not receive medical care in the past 12 months lost health insurance between the initial and follow-up surveys.AYA cancer survivors with health insurance were much more likely to receive cancer-related medical care than those without insurance.Despite the need for post-treatment medical care, lacking health insurance is a barrier to receiving any medical care among AYAs.

Background Bone mineral density (BMD) and lean mass (LM) may both decrease in breast cancer survivors, thereby increasing risk of falls and fractures. Research is needed to determine whether lean mass (LM) and fat mass (FM) independently relate to BMD in this patient group. Methods The Health, Eating, Activity, and Lifestyle Study participants included 599 women, ages 29–87 years, diagnosed from 1995–1999 with stage 0-IIIA breast cancer, who underwent dual-energy X-ray absorptiometry scans approximately 6-months postdiagnosis. We calculated adjusted geometric means of total body BMD within quartiles (Q) of LM and FM. We also stratified LM-BMD associations by a fat mass index threshold that tracks with obesity (lower body fat: ≤12.9 kg/m2; higher body fat: >12.9 kg/m2) and stratified FM-BMD associations by appendicular lean mass index level corresponding with sarcopenia (non-sarcopenic: ≥ 5.45 kg/m2 and sarcopenic

Posttraumatic growth (PTG) after cancer can minimize the emotional impact of disease and treatment; however, the facilitators of PTG, including support seeking, are unclear. The authors examined the role of support seeking on PTG among 604 breast cancer survivors ages 40 to 64 from the Health Eating, Activity, and Lifestyle (HEAL) Study. Multivariable linear regression was used to examine predictors of support seeking (participation in support groups and confiding in health care providers) as well as the relationship between support seeking and PTG. Support program participation was moderate (61.1%) compared to the high rates of confiding in health professionals (88.6%), and African Americans were less likely to report participating than non-Hispanic Whites (odds ratio = .14, confidence intervals [0.08, 0.23]). The mean (SD) PTG score was 48.8 (27.4) (range 0-105). Support program participation (β = 10.4) and confiding in health care providers (β = 12.9) were associated (p.001) with higher PTG. In analyses stratified by race/ethnicity, PTG was significantly higher in non-Hispanic Whites and African American support program participants (p.01), but not significantly higher in Hispanics/Latinas. Confiding in a health care provider was only associated with PTG for non-Hispanic Whites (p = .02). Support program experiences and patient-provider encounters should be examined to determine which attributes facilitate PTG in diverse populations.

Brief, valid measures of fatigue, a prevalent and distressing cancer symptom, are needed for use in research. This study’s primary aim was to create a shortened version of the revised Piper Fatigue Scale (PFS-R) based on data from a diverse cohort of breast cancer survivors. A secondary aim was to determine whether the PFS captured multiple distinct aspects of fatigue (a multidimensional model) or a single overall fatigue factor (a unidimensional model). Breast cancer survivors (n = 799; stages in situ through IIIa; ages 29–86 years) were recruited through three SEER registries (New Mexico, Western Washington, and Los Angeles, CA) as part of the Health, Eating, Activity, and Lifestyle (HEAL) study. Fatigue was measured approximately 3 years post-diagnosis using the 22-item PFS-R that has four subscales (Behavior, Affect, Sensory, and Cognition). Confirmatory factor analysis was used to compare unidimensional and multidimensional models. Six criteria were used to make item selections to shorten the PFS-R: scale’s content validity, items’ relationship with fatigue, content redundancy, differential item functioning by race and/or education, scale reliability, and literacy demand. Factor analyses supported the original 4-factor structure. There was also evidence from the bi-factor model for a dominant underlying fatigue factor. Six items tested positive for differential item functioning between African-American and Caucasian survivors. Four additional items either showed poor association, local dependence, or content validity concerns. After removing these 10 items, the reliability of the PFS-12 subscales ranged from 0.87 to 0.89, compared to 0.90–0.94 prior to item removal. The newly developed PFS-12 can be used to assess fatigue in African-American and Caucasian breast cancer survivors and reduces response burden without compromising reliability or validity. This is the first study to determine PFS literacy demand and to compare PFS-R responses in African-Americans and Caucasian breast cancer survivors. Further testing in diverse populations is warranted.

Background:Many cancer survivors experience declines in health-related quality of life (HRQOL) and increases in fatigue as a result of cancer and its treatment. Exercise is linked to improvements in these outcomes, but little is known about the role of sedentary behavior. In a large, ethnically-diverse cohort of breast cancer survivors, we examined the relationship between sedentary time, HRQOL, and fatigue, and examined if that relationship differed by recreational moderate-vigorous physical activity (MVPA) level.Methods:Participants were 710 women diagnosed with stage 0-IIIA breast cancer in the Health, Eating, Activity, and Lifestyle Study. Women completed questionnaires at approximately 30-months postdiagnosis (sedentary time; recreational MVPA) and 41-months postdiagnosis (HRQOL; fatigue). In multivariate models, we regressed these outcomes linearly on quartiles of daily sedentary time, and a variable jointly reflecting sedentary time quartiles and MVPA categories (0; >0 to Results:Sedentary time was not independently related to subscales or summary scores of HRQOL or fatigue. In addition, comparisons of women with high vs. low (Q4:Q1) sedentary time by MVPA level did not result in significant differences in HRQOL or fatigue.Conclusion:In this breast cancer survivor cohort, self-reported sedentary time was not associated with HRQOL or fatigue, 3.5 years postdiagnosis.

Elevated circulating insulin-like growth factor-1 (IGF-1), a breast epithelial cell mitogen, is associated with breast cancer development. However, its association with breast cancer survival is not established. Circulating concentrations of IGF-1 are controlled via binding proteins, including IGF Binding Protein-3 (IGFBP-3), that may modulate the association of IGF-1 with breast-cancer outcomes. We measured IGF-1 and IGFBP-3 concentrations in serum from 600 women enrolled in the health, eating, activity, and lifestyle (HEAL) study, a multiethnic, prospective cohort study of women diagnosed with stage I-IIIA breast cancer. We evaluated the association between IGF-1 and IGFBP-3, and as a ratio, modeled using quintile cut-points, with risk of breast cancer-specific (n = 42 deaths) and all-cause mortality (n = 87 deaths) using Cox proportional hazards models. In models adjusted for body mass index, ethnicity, tamoxifen use at time of blood draw, treatment received at diagnosis and IGFBP-3, women in the highest quintile of IGF-1 level had an increased risk of all-cause mortality (Hazard Ratio (HR) = 3.10, 95% CI 1.21-7.93, p = 0.02), although no dose-response association was evident. The IGF-1/IGFBP-3 ratio, an indicator of free IGF-I levels, was significantly associated with increasing risk of all-cause mortality (HR = 2.83, 95% CI 1.25-6.36 p(trend) = 0.01, upper vs. lower quintile) in a fully adjusted model. In conclusion, high serum levels of IGF-1 and the IGF-1/IGFBP-3 ratio were associated with increased risk of all-cause mortality in women with breast cancer. These results need to be confirmed in larger breast cancer survivor cohorts.