Do Contemporary Cancer Survivors Experience Better Quality of Life? Evaluating a Decade of SEER Medicare Health Outcomes Survey Data.

BACKGROUND: A cancer diagnosis may have deleterious effects on health-related quality of life (HRQOL) as adults age. This study examined differences in HRQOL between cancer and matched noncancer Medicare beneficiaries over 65, within and across two time periods. METHODS: We used novel matching methods on data from the Surveillance, Epidemiology and End Results (SEER)-Medicare Health Outcomes Survey (MHOS) data resource. We matched SEER-MHOS respondents with cancer from a recent period (2015-2019) to respondents with cancer from an earlier period (2008-2012). We then matched these two cohorts, without replacement, to contemporary cohorts without cancer diagnoses. We estimated Veteran's RAND 12-Item Short Form Survey Physical Component Summary (PCS) and Mental Component Summary (MCS) scores for all cohorts. RESULTS: Our analysis found significantly higher mean MCS scores in the recent period for those with cancer relative to the recent noncancer control group. Breast and lung cancer presented positive and statistically significant trends. We found statistically insignificant differences in PCS scores between the two time periods. No cancer sites had different PCS scores over time compared with the comparison group. CONCLUSIONS: Mental health for those with cancer improved more between 2008 and 2019 than a matched noncancer comparison group. Physical health remained stable across time. These findings highlight the importance of including a matched noncancer group when evaluating HRQOL outcomes. IMPACT: SEER-MHOS respondents with cancer report stable PCS scores across 15 years of data and higher MCS scores relative to noncancer controls.

Systematic symptom management in the IMPACT Consortium: rationale and design for 3 effectiveness-implementation trials.

Cancer and its treatment produce deleterious symptoms across the phases of care. Poorly controlled symptoms negatively affect quality of life and result in increased health-care needs and hospitalization. The Improving the Management of symPtoms during And following Cancer Treatment (IMPACT) Consortium was created to develop 3 large-scale, systematic symptom management systems, deployed through electronic health record platforms, and to test them in pragmatic, randomized, hybrid effectiveness and implementation trials. Here, we describe the IMPACT Consortium's conceptual framework, its organizational components, and plans for evaluation. The study designs and lessons learned are highlighted in the context of disruptions related to the COVID-19 pandemic.

Healthcare delivery research in older adults with cancer: A review of National Institutes of Health-funded projects.

BACKGROUND: Cancer is a disease of aging, and most people with cancer are older than 65. However, widespread uptake of evidence-based approaches that facilitate quality care delivery for older adults with cancer are lacking. This project aimed to review National Institutes of Health (NIH) grants funded in the last decade that focused on healthcare delivery in aging and older adults with cancer, and to examine grant-related characteristics, study designs, and scientific topics included. METHODS: A search was conducted of all extramural NIH research grants awarded between fiscal year 2012 to 2021. We examined NIH terms; keyword searches of titles, abstracts, and specific aims were implemented to maximize search efficiency. Extraction criteria focused on grant-related and study characteristics. A priori scientific topics for coding included geriatric assessment, care decision-making, communication, care coordination, physical and psychosocial functioning/symptoms, and clinical outcomes. RESULTS: A total of 48 funded grants met the inclusion criteria. A near-equal split was observed between R03, R21, and R01 grants. Most grants did not include family caregivers or focus on end-of-life care. Most grants included multiple cancers and were conducted during active treatment and in hospital/clinic settings. Common scientific topics included geriatric assessment, care decision-making, physical and psychosocial functioning/symptoms, communication, and care coordination. Few grants focused on cognitive functioning. CONCLUSIONS: Several gaps in the portfolio were identified, including family caregiver inclusion, end-of-life care, and studies focusing on cognitive functioning.

Implementation and evaluation of an expanded electronic health record-integrated bilingual electronic symptom management program across a multi-site Comprehensive Cancer Center: The NU IMPACT protocol.

BACKGROUND: People with cancer experience symptoms that adversely affect quality of life. Despite existing interventions and clinical guidelines, timely symptom management remains uneven in oncology care. We describe a study to implement and evaluate an electronic health record (EHR)-integrated symptom monitoring and management program in adult outpatient cancer care. METHODS: Our cancer patient-reported outcomes (cPRO) symptom monitoring and management program is a customized EHR-integrated installation. We will implement cPRO across all Northwestern Memorial HealthCare (NMHC) hematology/oncology clinics. We will conduct a cluster randomized modified stepped-wedge trial to evaluate patient and clinician engagement with cPRO. Further, we will embed a patient-level randomized clinical trial to evaluate the impact of an additional enhanced care (EC; cPRO plus web-based symptom self-management intervention) relative to usual care (UC; cPRO alone). The project uses a Type 2 hybrid effectiveness-implementation approach. The intervention will be implemented across seven regional clusters within the healthcare system comprising 32 clinic sites. A 6-month prospective pre-implementation enrollment period will be followed by a post-implementation enrollment period, during which newly enrolled, consenting patients will be randomly assigned (1:1) to EC or UC. We will follow patients for 12 months post-enrollment. Patients randomized to EC will receive evidence-based symptom-management content on cancer-related concerns and approaches to enhance quality of life, using a web-based tool ("MyNM Care Corner"). This design allows for within- and between-site evaluation of implementation plus a group-based comparison to demonstrate effectiveness on patient-level outcomes. DISCUSSION: The project has potential to guide implementation of future healthcare system-level cancer symptom management programs. http://ClinicalTrials.gov # NCT03988543.

Associations between illness burden and care experiences among Medicare beneficiaries before or after a cancer diagnosis.

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's Role in Advancing Health-Care Delivery Research.

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.

Survivorship for Individuals Living With Advanced and Metastatic Cancers: National Cancer Institute Meeting Report.

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.

Survival outcomes for cancer types with the highest death rates for adolescents and young adults, 1975-2016.

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.

Self-reported symptoms of arm lymphedema and health-related quality of life among female breast cancer survivors.

We examined cross-sectional associations between arm lymphedema symptoms and health-related quality of life (HRQoL) in the Health, Eating, Activity and Lifestyle (HEAL) Study. 499 women diagnosed with localized or regional breast cancer at ages 35-64 years completed a survey, on average 40 months after diagnosis, querying presence of lymphedema, nine lymphedema-related symptoms, e.g., tension, burning pain, mobility loss, and warmth/redness, and HRQoL. Analysis of covariance models were used to assess HRQoL scores in relation to presence of lymphedema and lymphedema-related symptoms. Lymphedema was self-reported by 137 women, of whom 98 were experiencing lymphedema at the time of the assessment. The most common symptoms were heaviness (52%), numbness (47%), and tightness (45%). Perceived physical health was worse for women reporting past or current lymphedema than those reporting no lymphedema (P-value < 0.0001). No difference was observed for perceived mental health (P-value = 0.31). Perceived physical health, stress, and lymphedema-specific HRQoL scores worsened as number of symptoms increased (P-values ≤ 0.01). Women reporting tension in the arm had lower physical health (P-value = 0.01), and those experiencing burning pain, tension, heaviness, or warmth/redness in the arm had lower lymphedema-specific HRQoL (P-values < 0.05). Treatment targeting specific lymphedema-related symptoms in addition to size/volume reduction may improve some aspects of HRQoL among affected women.

Current state of funded National Institutes of Health grants focused on individuals living with advanced and metastatic cancers: a portfolio analysis.

PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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. IMPLICATIONS FOR CANCER SURVIVORS: 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.

Examination of individual and multiple comorbid conditions and health-related quality of life in older cancer survivors.

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 (ß = - 4.96, p < 0.001), survivors with arthritis reported significantly higher pain (ß = 4.37, p < 0.001), and survivors with CVD reported significantly higher fatigue (ß = 3.45, p < 0.001) compared to survivors without each condition. Having cancer + 1 condition was not as strongly associated with all outcomes as when individual conditions were tested (e.g. pain: ß = 3.09, p < 0.001). Having 2+ comorbidities had a stronger association with all outcomes (e.g. physical function: ß = - 7.51, p < 0.001) than examining conditions individually. CONCLUSIONS: Knowing the specific comorbid condition profile of an older cancer survivor provides insight into specific HRQOL outcomes that may be impaired in cancer survivorship, but understanding total comorbidity burden, regardless of the specific conditions, sheds light on survivors at-risk for multiple impairments in HRQOL. This information, taken together, can inform risk-stratified survivorship care.

Random survival forests using linked data to measure illness burden among individuals before or after a cancer diagnosis: Development and internal validation of the SEER-CAHPS illness burden index.

PURPOSE: To develop and internally validate an illness burden index among Medicare beneficiaries before or after a cancer diagnosis. METHODS: Data source: SEER-CAHPS, linking Surveillance, Epidemiology, and End Results (SEER) cancer registry, Medicare enrollment and claims, and Medicare Consumer Assessment of Healthcare Providers and Systems (Medicare CAHPS) survey data providing self-reported sociodemographic, health, and functional status information. To generate a score for everyone in the dataset, we tabulated 4 groups within each annual subsample (2007-2013): 1) Medicare Advantage (MA) beneficiaries or 2) Medicare fee-for-service (FFS) beneficiaries, surveyed before cancer diagnosis; 3) MA beneficiaries or 4) Medicare FFS beneficiaries surveyed after diagnosis. Random survival forests (RSFs) predicted 12-month all-cause mortality and drew predictor variables (mean per subsample = 44) from 8 domains: sociodemographic, cancer-specific, health status, chronic conditions, healthcare utilization, activity limitations, proxy, and location-based factors. Roughly two-thirds of the sample was held out for algorithm training. Error rates based on the validation ("out-of-bag," OOB) samples reflected the correctly classified percentage. Illness burden scores represented predicted cumulative mortality hazard. RESULTS: The sample included 116,735 Medicare beneficiaries with cancer, of whom 73 % were surveyed after their cancer diagnosis; overall mean mortality rate in the 12 months after survey response was 6%. SEER-CAHPS Illness Burden Index (SCIBI) scores were positively skewed (median range: 0.29 [MA, pre-diagnosis] to 2.85 [FFS, post-diagnosis]; mean range: 2.08 [MA, pre-diagnosis] to 4.88 [MA, post-diagnosis]). The highest decile of the distribution had a 51 % mortality rate (range: 29-71 %); the bottom decile had a 1% mortality rate (range: 0-2 %). The error rate was 20 % overall (range: 9% [among FFS enrollees surveyed after diagnosis] to 36 % [MA enrollees surveyed before diagnosis]). CONCLUSIONS: This new morbidity measure for Medicare beneficiaries with cancer may be useful to future SEER-CAHPS users who wish to adjust for comorbidity.

Trends in Racial/Ethnic Disparity of Health-Related Quality of Life in Older Adults with and without Cancer (1998-2012).

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.

Effect of instrumental support on distress among family caregivers: Findings from a nationally representative study.

BACKGROUND AND OBJECTIVE: A 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. METHOD: We 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. RESULTS: Our 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. CONCLUSIONS: Poor instrumental support is associated with high distress among caregivers, suggesting the need for palliative and supportive care interventions to help caregivers leverage instrumental support.

International standards for the analysis of quality-of-life and patient-reported outcome endpoints in cancer randomised controlled trials: recommendations of the SISAQOL Consortium.

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.

Healthcare providers' discussions of physical activity with older survivors of cancer: Potential missed opportunities for health promotion.

OBJECTIVES: 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. MATERIALS AND METHODS: 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. RESULTS: 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). DISCUSSION: 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.

Caregiving tasks and unmet supportive care needs of family caregivers: A U.S. population-based study.

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.

Care delivery, patient experiences, and health outcomes among sexual and gender minority patients with cancer and survivors: A scoping review.

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.