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Patient-reported outcomes (PROs), such as symptoms, functioning, and other health-related quality-of-life concepts are gaining a more prominent role in the benefit–risk assessment of cancer therapies. However, varying ways of analysing, presenting, and interpreting PRO data could lead to erroneous and inconsistent decisions on the part of stakeholders, adversely affecting patient care and outcomes. The Setting International Standards in Analyzing Patient-Reported Outcomes and Quality of Life Endpoints in Cancer Clinical Trials-Innovative Medicines Initiative (SISAQOL-IMI) Consortium builds on the existing SISAQOL work to establish recommendations on design, analysis, presentation, and interpretation for PRO data in cancer clinical trials, with an expanded set of topics, including more in-depth recommendations for randomised controlled trials and single-arm studies, and for defining clinically meaningful change. This Policy Review presents international stakeholder views on the need for SISAQOL-IMI, the agreed on and prioritised set of PRO objectives, and a roadmap to ensure that international consensus recommendations are achieved.

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.

Improvements in cancer care delivery have the potential to reduce morbidity and mortality from cancer, however, challenges to delivery of recommended care limit progress. These challenges include growing demands for care, increasing treatment complexity, inadequate care coordination, dramatic increases in costs, persistent disparities in care, and insufficient use of evidence-based guidelines. Recognizing the important role of research in understanding and addressing these challenges, the National Cancer Institute created the Healthcare Delivery Research Program (HDRP) in 2015 as a catalyst for expanding work in this area. Health-care delivery research is a multidisciplinary effort which recognizes that care delivery occurs in a multilevel system encompassing individuals, health-care systems, and communities. HDRP staff use a range of activities to fulfill the program’s mission of advancing innovative research to improve delivery of care across the cancer control continuum. In addition to developing funding opportunities, HDRP staff; support and facilitate the use of research infrastructure for conducting health-care delivery research; oversee publicly available data that can be used to evaluate patterns, costs, and patient experiences of care; contribute to development and dissemination of standardized health measurement tools for public use; and support professional development and training to build capacity within the field and grow the workforce. As HDRP enters its sixth year, we appreciate the opportunity to reflect on the program’s progress in advancing the science of health-care delivery. At the same time, we recognize the need for the program to evolve and develop additional resources and opportunities to address new and emerging challenges.

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

Background: Non-White cancer survivors often report poorer health compared with Non-Hispanic Whites. Whether those disparities are changing over time is unknown. We examined changes in health-related quality of life (HRQOL) by race/ethnicity from 1998 to 2012 among older adults with and without cancer. Methods: Data from Medicare Advantage beneficiaries were obtained from the linkage between the Medicare Health Outcomes Survey and Surveillance, Epidemiology, and End Results cancer registry data (SEER-MHOS). HRQOL was assessed with the SF-36/VR-12 Physical and Mental Component Scores (PCS/MCS) and 8 scales (Physical Functioning, Role-Physical, Bodily Pain, General Health, Vitality, Social Functioning, Mental Health, Role-Emotional). Annual average HRQOL scores, adjusting for age at survey, gender, number of comorbidities, education, and SEER registry, were compared over time. Absolute (between-group variance; BGV) and relative (mean log deviation; MLD) indices of disparity were generated using the National Cancer Institute's health disparities calculator (HD*Calc). Joinpoint was used to test for significant changes in the slopes of the linear trend lines. Results: Racial/ethnic disparities in MCS increased in absolute and relative terms over time for those with [BGV = 15.8 (95% confidence interval [CI], 10.2–21.6); MLD = 16.2 (95% CI, 10.5–22.1)] and without [BGV = 19.3 (95% CI, 14.9–23.8); MLD = 19.6 (95% CI, 15.2–24.0)] cancer. PCS disparities over time did not significantly change. Changes in disparities in 5 of 8 HRQOL scales were significant in those with and without cancer. Conclusions: Older adults with cancer show increasing racial/ethnic disparities in HRQOL, particularly in mental health status. Impact: Future research should evaluate trends in HRQOL and explore factors that contribute to health disparities.

Background and ObjectiveA priority focus on palliative and supportive care is helping the 43.5 million caregivers who care for individuals with serious illness. Lacking support may lead to caregiver distress and poorer care delivery to patients with serious illness. We examined the potential of instrumental support (assistance with material and task performance) to mitigate distress among caregivers.MethodWe analyzed data from the nationally representative Health Information National Trends Survey (HINTS V2, 2018). Informal/family caregivers were identified in HINTS V2 if they indicated they were caring for or making healthcare decisions for another adult with a health problem. We used the PROMIS® instrumental support four-item short-form T-scores and the Patient Health Questionnaire (PHQ-4) for distress. We examined multivariable linear regression models for associations between distress and instrumental support, adjusted for sampling weights, socio-demographics, and caregiving variables (care recipient health condition(s), years caregiving (≥2), relationship to care recipient, and caregiver burden). We examined interactions between burden and instrumental support on caregiver distress level.ResultsOur analyses included 311 caregivers (64.8% female, 64.9% non-Hispanic White). The unweighted mean instrumental support T-score was 50.4 (SD = 10.6, range = 29.3–63.3); weighted mean was 51.2 (SE = 1.00). Lower instrumental support (p < 0.01), younger caregiver age (p < 0.04), higher caregiving duration (p = 0.008), and caregiver unemployment (p = 0.006) were significantly associated with higher caregiver distress. Mean instrumental support scores by distress levels were 52.3 (within normal limits), 49.4 (mild), 48.9 (moderate), and 39.7 (severe). The association between instrumental support and distress did not differ by caregiver burden level.ConclusionsPoor instrumental support is associated with high distress among caregivers, suggesting the need for palliative and supportive care interventions to help caregivers leverage instrumental support.

An important and often overlooked subpopulation of cancer survivors is individuals who are diagnosed with or progress to advanced or metastatic cancer. Living longer with advanced or metastatic cancer often comes with a cost of burdensome physical and psychosocial symptoms and complex care needs; however, research is limited on this population. Thus, in May 2021, the National Cancer Institute convened subject matter experts, researchers, clinicians, survivors, and advocates for a 2-day virtual meeting. The purpose of this report is to provide a summary of the evidence gaps identified by subject matter experts and attendees and key opportunities identified by the National Cancer Institute in 5 research areas: epidemiology and surveillance, symptom management, psychosocial research, health-care delivery, and health behaviors. Identified gaps and opportunities include the need to develop new strategies to estimate the number of individuals living with advanced and metastatic cancers; understand and address emerging symptom trajectories; improve prognostic understanding and communication between providers, patients, and caregivers; develop and test models of comprehensive survivorship care tailored to these populations; and assess patient and provider preferences for health behavior discussions throughout the survivorship trajectory. To best address the needs of individuals living with advanced and metastatic cancer and to deliver comprehensive evidence-based quality care, research is urgently needed to fill evidence gaps, and it is essential to incorporate the survivor perspective. Developing such an evidence base is critical to inform policy and practice.

Sexual and gender minorities (SGMs) face a disproportionate burden of cancer, yet little is known about the experiences and specific needs of these underserved populations in cancer care delivery. The authors conducted a scoping review to characterize the literature on cancer care delivery, health outcomes, and health care experiences for patients with cancer and survivors identifying as SGM. In total, 1176 peer-reviewed citations were identified after a systematic search of the PubMed/Medline, PsycInfo, Cumulative Index of Nursing and Allied Health Literature (CINAHL), and Web of Sciences databases without restriction on publication date. The details captured included study aims, design, population, cancer site, and main findings. Thirty-seven studies published from 1998 to 2017 met the study criteria. Most studies were conducted in the post-treatment survivorship phase of the continuum (n = 30), and breast cancer was the most common cancer site (n = 20). There were only 2 intervention studies. The studies reviewed were classified under the following areas of focus: 1) disclosure of sexual orientation and gender identity, 2) quality of care, 3) psychosocial impact of/ adjustment to cancer, 4) social support, 5) sexual functioning, and 6) health risks/health behavior. Very little research reported an assessment of gender minority status or included a focus on gender minorities (n = 7). This review revealed substantial research gaps given a lack of population-based data and small sample sizes, likely related to the absence of systematic collection of sexual orientation and gender identity information in the cancer care context. Deficient research in this area likely perpetuates health disparities. Further research is needed to identify and remove the barriers to delivering high-quality care to SGM individuals with cancer.

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.

Patients' perspectives about their health are critical to improving health outcomes. Patient reported outcomes (PRO) are emerging as a standard way to capture patient perspectives in clinical research and care delivery. Conventionally, researchers used lengthy fixed instruments that were burdensome and had limited applicability across disease groups and the life course. To address these challenges, the National Institutes of Health invested in the development of an innovative, paradigm-shifting measurement system: The Patient-Reported Outcomes Measurement Information System® (PROMIS®). This article provides an overview of the vision, funding, development, and growth of PROMIS® over the last 15 years. We highlight current and future research needs given the expanding adoption of PROMIS® across a variety of health care contexts. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

419 Background: The patient portal is part of an electronic health record (EHR) that allows patients to communicate with their healthcare team. The portal also provides a platform for patients to receive and complete symptom surveys that can be directly integrated into the EHR, allowing clinical care teams to monitor symptoms and provide cancer symptom management. The Improving Management of symPtoms during And following Cancer Treatment (IMPACT) consortium, supported by the National Cancer Institute’s Cancer MoonshotSM, aims to improve symptom control for cancer patients through assessment and symptom management interventions deployed via the EHR. This initiative presents an opportunity to examine portal enrollment and variation in use, factors critical to successful implementation, especially among groups that have high cancer symptom burden. To this end, we examine: 1) relationships between portal enrollment prior to the launch of IMPACT interventions and neighborhood broadband access, demographic, and social characteristics; and 2) frequency of pre-intervention portal use for any purpose among enrollees. Methods: Data are derived from two of three IMPACT research centers. Enrollment in and frequency of portal use, mode of accessing the portal (web vs. phone), social, demographic, and cultural factors were extracted from the EHR. Rural Urban Commuting Area (RUCA) codes were used to classify population density and degree of rurality. Broadband access was estimated using 2015-2019 American Community Survey estimates matched to zip codes from enrolled IMPACT patients and classified as a patient’s residence being in a community with high (≥85% of households) or low (< 85% of households) access. Bivariate comparisons and adjusted odds ratios were used to describe all associations. Results: Forty-seven percent of patients (22,596/48,034) were enrolled in the portal prior to the intervention. Patients in zip codes with low broadband access and those who were men, > 65 years old, not White, of Hispanic ethnicity, or disabled or not employed had significantly lower odds of being enrolled in the portal. If enrolled, 21% (n = 4825) used the portal at least once a week. Less variation was found in the average frequency of portal use, but patients younger than 40, and those who were Black, disabled, unemployed, or those who used a mobile device to access the portal had the lowest odds of accessing it at least once a week. Conclusions: Significant disparities in portal enrollment exist across demographic groups and among those with limited broadband access. Among those enrolled, most used the portal less than once a week. Fewer differences in frequency of use were observed by sociodemographic factors. Improving portal enrollment and frequency of use may be critical for symptom management interventions deployed via patient portals.

INTRODUCTION: To understand associations between a new measure of illness burden and care experiences in a large, national sample of Medicare beneficiaries surveyed before or after a cancer diagnosis. MATERIALS AND METHODS: The SEER-CAHPS Illness Burden Index (SCIBI) was previously developed using Surveillance, Epidemiology, and End Results (SEER)–Consumer Assessment of Healthcare Providers and Systems (CAHPS) linked data. The SCIBI provides a standardized morbidity score based on self- and other-reported information from 8 domains and proxies relative risk of 12-month, all-cause mortality among people surveyed before or after a cancer diagnosis. We analyzed a population of Medicare beneficiaries (n = 116,735; 49% fee-for-service and 51% Medicare Advantage [MA]; 73% post-cancer diagnosis) surveyed 2007 – 2013 to understand how their SCIBI scores were associated with 12 different care experience measures. Frequentist and Bayesian multivariable regression models adjusted for standard case-mix adjustors, enrollment type, timing of cancer diagnoses relative to survey, and survey year. RESULTS AND DISCUSSION: SCIBl scores were associated (P < .001) in frequentist models with better ratings of Health Plan (coefficient ± standard error: 0.33 ± 0.08) and better Getting Care Quickly scores (0.51 ± 0.09). In Bayesian models, individuals with higher illness burden had similar results on the same two measures and also reported reliably worse Overall Care experiences (coefficient ± posterior SD: −0.17 ± 0.06). Illness burden may influence how people experience care or report those experiences. Individuals with greater illness burdens may need intensive care coordination and multilevel interventions before and after a cancer diagnosis.

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.

Patient-reported outcomes (PROs), such as symptoms, function, and other health-related quality-of-life aspects, are increasingly evaluated in cancer randomised controlled trials (RCTs) to provide information about treatment risks, benefits, and tolerability. However, expert opinion and critical review of the literature showed no consensus on optimal methods of PRO analysis in cancer RCTs, hindering interpretation of results. The Setting International Standards in Analyzing Patient-Reported Outcomes and Quality of Life Endpoints Data Consortium was formed to establish PRO analysis recommendations. Four issues were prioritised: developing a taxonomy of research objectives that can be matched with appropriate statistical methods, identifying appropriate statistical methods for PRO analysis, standardising statistical terminology related to missing data, and determining appropriate ways to manage missing data. This Policy Review presents recommendations for PRO analysis developed through critical literature reviews and a structured collaborative process with diverse international stakeholders, which provides a foundation for endorsement; ongoing developments of these recommendations are also discussed.

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.

Objective To describe the type of care provided by a nationally-representative sample of informal caregivers, the frequency of unmet supportive care needs, and examine characteristics associated with unmet needs. Methods Using data from the Health Information National Trends Survey, we identified caregivers of an adult care recipient. Descriptive statistics examined support provided by caregivers for activities of daily living (ADLs) and instrumental activities of daily living (IADLs) and caregiver perceptions of their needs in five areas: medical/nursing tasks, accessing services, respite care, support groups, and counseling for caregivers. Bivariate statistics examined sociodemographic and caregiver characteristics associated with each need. Results Among 316 caregivers, 30.9% reported at least one unmet supportive care need. Caregivers most often provided support for 0–2 ADLs and 5–7 IADLs. Younger age and longer duration of time caregiving were associated with unmet supportive care needs for medical/nursing training (p = 0.02 and 0.04, respectively). Caregivers providing assistance with more ADLs reported needs for respite care support (p=0.03). Conclusion Subgroups of caregivers that may be most vulnerable with greater unmet supportive care needs are those that are younger, have provided care for longer, and those assisting with more ADLs. Future research should explore these factors to inform intervention development.

A case of a young adult patient in the days immediately after a cancer diagnosis illustrates the critical importance of three interrelated core coordinating mechanisms—closed-loop communication, shared mental models, and mutual trust—of teamwork in an adolescent and young adult multidisciplinary oncology team. The case illustrates both the opportunities to increase team member coordination and the problems that can occur when coordination breaks down. A model for teamwork is presented, which highlights the relationships among these coordinating mechanisms and demonstrates how balance among them works to optimize team function and patient care. Implications for clinical practice and research suggested by the case are presented.

Author(s): Wettergren, Lena; Kent, Erin E; Mitchell, Sandra A; Zebrack, Brad; Lynch, Charles F; Rubenstein, Mara B; Keegan, Theresa HM; Wu, Xiao-Cheng; Parsons, Helen M; Smith, Ashley Wilder; AYA HOPE Study Collaborative Group | Abstract: ObjectiveThis cohort study examined the impact of cancer on sexual function and intimate relationships in adolescents and young adults (AYAs). We also explored factors predicting an increased likelihood that cancer had negatively affected these outcomes.MethodsParticipants (n = 465, ages 15-39) in the Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study completed two surveys approximately 1 and 2nyears post-cancer diagnosis. We used multivariable logistic regression to determine factors negatively affected by perceptions of sexual function at 2nyears post-diagnosis.ResultsForty-nine percent of AYAs reported negative effects on sexual function at 1nyear post-cancer diagnosis and 70% of those persisted in their negative perceptions 2nyears after diagnosis. Those reporting a negative impact at 2nyears were more likely to be 25nyears or older (OR, 2.53; 95% CI, 1.44-4.42), currently not raising children (OR, 1.81; 95% CI, 1.06-3.08), experiencing fatigue (OR, 0.99; 95% CI, 0.975-0.998) and more likely to report that their diagnosis has had a negative effect on physical appearance (OR, 3.08; 95% CI, 1.97-4.81). Clinical factors and mental health were not significant predictors of negative effects on sexual function.ConclusionsMany AYAs diagnosed with cancer experience a persistent negative impact on sexual life up to 2nyears following diagnosis. The findings underscore the need to develop routine protocols to assess sexual function in AYAs with cancer and to provide comprehensive management in the clinical setting. Copyright © 2016 John Wiley a Sons, Ltd.

Each year, 70,000 adolescents and young adults (AYAs) between ages 15 and 39 years in the United States are diagnosed with cancer. In 2006, a National Cancer Institute (NCI) Progress Review Group (PRG) examined the state of science associated with cancer among AYAs. To assess the impact of the PRG and examine the current state of AYA oncology research, the NCI, with support from the LIVESTRONG Foundation, sponsored a workshop entitled "Next Steps in Adolescent and Young Adult Oncology" on September 16 and 17, 2013, in Bethesda, Maryland. This report summarizes the findings from the workshop, opportunities to leverage existing data, and suggestions for future research priorities. Multidisciplinary teams that include basic scientists, epidemiologists, trialists, biostatisticians, clinicians, behavioral scientists, and health services researchers will be essential for future advances for AYAs with cancer.

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.

PURPOSE: Given associations between poverty and poorer outcomes among older adults with cancer, we sought to understand the effects of dual enrollment in Medicare and Medicaid – as a marker of poverty – on self-reported care experiences among seniors diagnosed with cancer. METHODS: Retrospective, observational study using cancer registry, Medicare claims, and care experience survey data (Surveillance, Epidemiology, and End Results [SEER] - Consumer Assessment of Healthcare Providers and Systems [CAHPS(®)]) for a national sample of fee-for-service (FFS) and Medicare Advantage (MA) enrollees aged 65 or older. We included people with one incident primary, malignant cancer diagnosed between 2005 and 2011, surveyed within 2 years after diagnosis (n=9,800; 995 dual enrollees). Medicare CAHPS measures included 5 global ratings and 3 composite scores. RESULTS: After adjustment for potential confounders, people with cancer histories who were dually enrolled were significantly more likely to report better experiences than nonduals on 2 measures (Medicare/their health plan: adjusted odds ratio [aOR]: 0.68, 95% confidence interval [CI]: 0.53–0.87; prescription drug plan [PDP]: aOR: 0.54, 95% CI: 0.40–0.73). CONCLUSIONS: Dual enrollees with cancer reported better experiences than Medicare-only enrollees in terms of their health plan (Medicare FFS or Medicare Advantage) and their PDP. Better ratings among dually enrolled beneficiaries suggest possible divergence between health outcomes and care experiences, warranting additional investigation.

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.

There is rapidly growing interest in the capture of person-centered outcomes in clinical and population-based research and in healthcare delivery settings. Stakeholders (e.g., patients, clinicians, payers, regulators, researchers) increasingly agree that person-centered outcome measurement can accelerate the development of new knowledge, improve the efficiency and quality of care, and may also contribute to clinician or health system performance metrics and regulatory review of new therapies [1–3]. These outcomes may be incorporated into both observational studies and clinical trials, and provide salient endpoints in trials of preventive or disease-modifying treatments, as well as behavioral or psychosocial interventions. Over the past decade, the National Institutes of Health (NIH) has invested in the development and evaluation of several measurement systems that are now available for research and clinical use. These include the Patient Reported Outcomes Measurement Information System® (PROMIS®) [4], the NIH Toolbox for Assessment of Neurological and Behavioral Function (NIH Toolbox®) [5], the Quality of Life Outcomes in Neurological Disorders (Neuro-QoL) [6], Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) [7], and the Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) [8]. In this paper, we (i) describe each system; (ii) highlight considerations in the design and interpretation of studies that employ one or more of these systems; and (iii) summarize future directions for continued implementation of these systems in clinical practice, population-based research, observational studies, and clinical trials.

Introduction The Patient-Reported Outcomes Measurement Information System (PROMIS)® Sexual Function and Satisfaction measure (SexFS) version 1.0 was developed with cancer populations. There is a need to expand the SexFS and provide evidence of its validity in diverse populations. Aim The aim of this study was to describe the development of the SexFS v2.0 and present preliminary evidence for its validity. Methods Development built on version 1.0, plus additional review of extant items, discussions with 15 clinical experts, 11 patient focus groups (including individuals with diabetes, heart disease, anxiety, depression, and/or are lesbian, gay, bisexual, or aged 65 or older), 48 cognitive interviews, and psychometric evaluation in a random sample of U.S. adults plus an oversample for specific sexual problems (2281 men, 1686 women). We examined differential item functioning (DIF) by gender and sexual activity. We examined convergent and known-groups validity. Results The final set of domains includes 11 scored scales (interest in sexual activity, lubrication, vaginal discomfort, clitoral discomfort, labial discomfort, erectile function, orgasm ability, orgasm pleasure, oral dryness, oral discomfort, satisfaction), and six nonscored item pools (screeners, sexual activities, anal discomfort, therapeutic aids, factors interfering with sexual satisfaction, bother). Domains from version 1.0 were reevaluated and improved. Domains considered applicable across gender and sexual activity status, namely interest, orgasm, and satisfaction, were found to have significant DIF. We identified subsets of items in each domain that provided consistent measurement across these important respondent groups. Convergent and known-groups validity was supported. Conclusions The SexFS version 2.0 has several improvements and enhancements over version 1.0 and other extant measures, including expanded evidence for validity, scores centered around norms for sexually active U.S. adults, new domains, and a final set of items applicable for both men and women and those sexually active with a partner and without. The SexFS is customizable, allowing users to select relevant domains and items for their study.

Author(s): Shnorhavorian, Margarett; Harlan, Linda C; Smith, Ashley Wilder; Keegan, Theresa HM; Lynch, Charles F; Prasad, Pinki K; Cress, Rosemary D; Wu, Xiao-Cheng; Hamilton, Ann S; Parsons, Helen M; Keel, Gretchen; Charlesworth, Sarah E; Schwartz, Stephen M; AYA HOPE Study Collaborative Group | Abstract: BackgroundThe fertility of adolescent and young adult (AYA) patients with cancer can be threatened by treatments, but to the authors' knowledge little is known regarding the extent to which providers discuss this with patients or recommend fertility preservation, or the patient and physician characteristics associated with these interactions.MethodsQuestionnaires from 459 AYA patients with cancer who were diagnosed between 2007 and 2008 and recruited through 7 US population-based cancer registries were analyzed using sex-specific multivariable models. The authors assessed characteristics associated with not discussing therapy effects on fertility or fertility preservation options, and not making fertility preservation arrangements.ResultsMales without a medical oncologist were more likely not to be told that therapy might affect fertility than those with a medical oncologist (male odds ratio [OR], 2.28; 95% confidence interval [95% CI], 1.03-5.00). Individuals without insurance (male OR, 2.91 [95% CI, 1.41-5.91] and female OR, 5.46 [95% CI, 1.59-18.72]); those raising children aged l18 years; and, among males only, those who received treatment posing no or a low fertility risk (OR, 3.39; 95% CI, 1.60-7.16) were more likely not to discuss fertility preservation with providers. Finally, among males, those without a college degree (OR, 1.98; 95% CI, 1.00-3.97), lacking private insurance (OR, 2.97; 95% CI, 1.16-7.63), and raising children aged l18 years (OR, 3.53; 95% CI, 1.63-7.65) were more likely to not make fertility preservation arrangements; too few females had made fertility preservation arrangements for similar analyses to be performed.ConclusionsDiscussion and action surrounding fertility preservation for AYA patients with cancer are associated with medical factors, patient socioeconomic data, and child-rearing status. These results highlight the need for insurance coverage for fertility preservation and increased awareness of fertility preservation options.

Improvement in US survival rates among adolescents and young adults (AYAs, ages 15 through 39 years inclusive) diagnosed with non-Hodgkin lymphoma (NHL) has been documented over the last two decades. We examined national trends in survival disparities for AYAs with NHL by race/ethnicity and socioeconomic status (SES, county-level poverty) to further understand NHL and to begin monitoring health outcome disparities for this disease.Surveillance Epidemiology and End Results data were used to calculate 5-year relative survival rates of AYAs diagnosed with NHL from 1992 to 2007 and followed through 2011. Absolute and relative disparities were computed using HD*Calc. Whether a significant linear trend was present was evaluated using Joinpoint. Analyses were replicated after excluding individuals with known HIV infection.The study sample included 9,573 total and 7,121 non-HIV cases of NHL. Five-year survival rates improved for all groups over time. Significant decreases were found in absolute disparities for race/ethnicity (non-HIV), in relative disparities for SES (total) and race/ethnicity (total and non-HIV) (all p 0.05). Survival rates of non-Hispanic Blacks and Hispanics remained below than those of non-Hispanic Whites throughout the time period.Absolute and relative disparities in 5-year survival narrowed for AYAs with NHL over the time period. To continue to promote this trend, future research should investigate factors, particularly diagnostic delays and barriers to care, which continue to contribute to SES and racial/ethnic differences in survival. These factors may be particularly relevant to identify given the recent Affordable Care Act, which is designed to increase access to medical services, particularly for young adults.

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.

© 2016, Springer International Publishing Switzerland. Purpose: To evaluate how well three different patient-reported outcomes (PROs) measure individual change. Methods: Two hundred and fourteen patients (from two sites) initiating first or new chemotherapy for any stage of breast or gastrointestinal cancer participated. The 13-item FACIT Fatigue scale, a 7-item PROMIS®Fatigue Short Form (PROMIS 7a), and the PROMIS®Fatigue computer adaptive test (CAT) were administered monthly online for 6 months. Reliability of measured change was defined, under a population mixed effects model, as the ratio of estimated systematic variance in rate of change to the estimated total variance of measured individual differences in rate of change. Precision of individual measured change, the standard error of measurement of change, was given by the square root of the rate-of-change sampling variance. Linear and quadratic models were examined up to 3 and up to 6 months. Results: A linear model for measured change showed the following by 6 and 3 months, respectively: PROMIS CAT (0.363 and 0.342); PROMIS SF (0.408 and 0.533); FACIT (0.459 and 0.473). Quadratic models offered no noteworthy improvement over linear models. Both reliability and precision results demonstrate the need to improve the measurement of intra-individual change. Conclusions: These results illustrate the challenge of reliably measuring individual change in fatigue with a level of confidence required for intervention. Optimizing clinically useful measurement of intra-individual differences over time continues to pose a challenge for PROs.

© 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.

Background: Children’s activity level is commonly assessed in clinical research, but rigorous assessment tools for children are scarce. Our objectives were to improve pediatric activity self-report measures using qualitative methods to develop item pools that measure these concepts. Methods: On the basis of the items generated from our conceptual framework development, we applied cognitive interviews and comprehensibility reviews to ensure children readily understood the items. Results: Our methods resulted in 129 unique items—physical activities (80 items), sedentary behaviors (23 items), and strengthening activities (26 items)—that were comprehensible to children between the ages of 8 and 18 years. Comprehensibility review resulted in the deletion of 4 items. Conclusions: The resultant item pools reflect children’s experiences and understanding of the concepts of physical activities, sedentary behaviors, and strengthening activities. The item pools will undergo

Children's physical activity (PA) levels are commonly assessed in pediatric clinical research, but rigorous self-report assessment tools for children are scarce, and computer adaptive test implementations are rare. Our objective was to improve pediatric self-report measures of activity using semistructured interviews with experts and children for conceptualization of a child-informed framework.Semistructured interviews were conducted to conceptualize PA, sedentary behaviors, and strengthening activities. We performed systematic literature reviews to identify item-level concepts used to assess these 3 domains.We developed conceptual frameworks for each domain using words and phrases identified by children as relevant.Semistructured interview methods provide valuable information of children's perspectives and the ways children recall previous activities. Conceptualized domains of PA are based on the literature and expert views, which also reflect children's experiences and understanding, providing a basis for pediatric self-report instruments.