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.

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.

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.

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.

Examination of prostate-specific antigen (PSA) screening in military and civilian men: analysis of the 2018 behavioral risk factor surveillance system.

Purpose: To determine whether military men report different prostate-specific antigen (PSA) screening rates than civilian men and if shared decision-making (SDM) is associated with PSA screening.

Methods: We used data from the 2018 Behavioral Risk Factor Surveillance System and included 101,901 men (26,363 military and 75,538 civilian men) in the analysis conducted in 2021. We conducted binomial logistic regression analyses to determine covariate-adjusted associations between military status and receiving a PSA test in the last 2 years.

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.

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.

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.

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.

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.

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).

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.

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.

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.

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.

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.

Care experiences among dually enrolled older adults with cancer: SEER-CAHPS, 2005-2013.

Purpose: Given the 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).

Establishing clinically-relevant terms and severity thresholds for Patient-Reported Outcomes Measurement Information System (PROMIS) measures of physical function, cognitive function, and sleep disturbance in people with cancer using standard setting.

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.

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).

Beyond methods to applied research: Realizing the vision of PROMIS®.

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.