Access to Care for Adolescents and Young Adults With Cancer in the United States: State of the Literature.

Access to care remains a persistent challenge for adolescents and young adults (AYAs) with cancer. We review key findings in the science to date. (1) Location of care matters. There is survival benefit for AYAs treated either at a pediatric center or site with special status (eg, Children's Oncology Group, National Cancer Institute [NCI]-designated Comprehensive Cancer Center). (2) Socioeconomic status and insurance require further investigation. Medicaid expansion has had a moderate effect on AYA outcomes. The dependent care expansion benefit has come largely from improvements in coverage for younger populations whose parents have insurance, while some subgroups likely still face insurance gaps. (3) Clinical trial enrollment remains poor, but access may be improving. Numerous barriers and facilitators of clinical trial enrollment include those that are system level and patient level. NCI has established several initiatives over the past decade to improve enrollment, and newer collaboratives have recently brought together multidisciplinary US teams to increase clinical trial enrollment. (4) Effective AYA programs require provider and system flexibility and program reflection. With flexibility comes a need for metrics to assess program effectiveness in the context of the program model. Centers treating AYAs with cancer could submit a subset of metrics (appropriate to their program and/or services) to maintain their status; persistence would require an entity with staying power committed to overseeing the metrics and the system. Substantial clinical and biological advances are anticipated over the next 20 years that will benefit all patients with cancer. In parallel, it is crucial to prioritize research regarding access to health care and cancer care delivery; only with equitable access to care for AYAs can they, too, benefit from these advances.

Cancer survivorship experiences in Utah: an evaluation assessing indicators of survivors' quality of life, health behaviors, and access to health services.

PURPOSE: The 2016-2020 Utah Comprehensive Cancer Prevention and Control Plan prioritized strategies to address cancer survivorship experiences. In this paper we present estimates for nine indicators evaluating these priorities, trends over time, and assess disparities in survivorship experiences across demographic subgroups. METHODS: We surveyed a representative sample of Utah cancer survivors diagnosed between 2012 and 2019 with any reportable cancer diagnosis. We calculated weighted percentages and 95% confidence intervals (CI) for each indicator. We assessed change over time using a test for trend across survey years in a logistic regression model and used Rao-Scott F-adjusted chi-square tests to test the association between demographic characteristics and each survivorship indicator. RESULTS: Most of the 1,793 respondents (93.5%) reported their pain was under control, 85.7% rated their overall health as good, very good, or excellent, but 46.5% experienced physical, mental, or emotional limitations. Only 1.7% of survivors aged 75 or older were current smokers, compared to 5.8% of 65-74-year-olds and 7.9% of survivors aged 55-74 (p < 0.006). No regular physical activity was reported by 20.6% and varied by survivor age and education level. The proportion who received a survivorship care plan increased from 34.6% in 2018 to 43.0% in 2021 (p = 0.025). However, survivors under age 55 were significantly less likely to receive a care plan than older survivors. CONCLUSION: This representative survey of cancer survivors fills a gap in understanding of the cancer survivorship experience in Utah. Results can be used to evaluate and plan additional interventions to improve survivorship quality of life.

Utah Cancer Survivors: A Comprehensive Comparison of Health-Related Outcomes Between Survivors and Individuals Without a History of Cancer.

Assessments of cancer survivors' health-related needs are often limited to national estimates. State-specific information is vital to inform state comprehensive cancer control efforts developed to support patients and providers. We investigated demographics, health status/quality of life, health behaviors, and health care characteristics of long-term Utah cancer survivors compared to Utahans without a history of cancer. Utah Behavioral Risk Factor Surveillance System (BRFSS) 2009 and 2010 data were used. Individuals diagnosed with cancer within the past 5 years were excluded. Multivariable survey weighted logistic regressions and computed predictive marginals were used to estimate age-adjusted percentages and 95 % confidence intervals (CI). A total of 11,320 eligible individuals (727 cancer survivors, 10,593 controls) were included. Respondents were primarily non-Hispanic White (95.3 % of survivors, 84.1 % of controls). Survivors were older (85 % of survivors ≥40 years of age vs. 47 % of controls). Survivors reported the majority of their cancer survivorship care was managed by primary care physicians or non-cancer specialists (93.5 %, 95 % CI = 87.9-99.1). Furthermore, 71.1 % (95 % CI = 59.2-82.9) of survivors reported that they did not receive a cancer treatment summary. In multivariable estimates, fair/poor general health was more common among survivors compared to controls (17.8 %, 95 % CI = 12.5-23.1 vs. 14.2 %, 95 % CI = 12.4-16.0). Few survivors in Utah receive follow-up care from a cancer specialist. Provider educational efforts are needed to promote knowledge of cancer survivor issues. Efforts should be made to improve continuity in follow-up care that addresses the known issues of long-term survivors that preclude optimal quality of life, resulting in a patient-centered approach to survivorship.

Cost-related medication nonadherence among adolescent and young adult cancer survivors.

BACKGROUND: This study investigated cost-related medication nonadherence among survivors of adolescent and young adult cancer and a comparison group in the United States. METHODS: A cross-sectional analysis of the 2013 to 2015 National Health Interview Survey was performed. N=953 patients who were diagnosed with cancer between the ages of 15 and 39 years were identified, and a comparison group was created using propensity scores. Cost-related medication nonadherence was determined by individuals' report of skipping medication, taking less medication, or delaying filling medication to save money in the previous year. Covariates included demographics, insurance status, financial factors (eg, out-of-pocket health care expenditures), and health-related factors (eg, comorbidity and mental distress). Chi-square tests were used to compare nonadherence between survivors and the comparison group. Logistic regressions identified covariates associated with nonadherence. RESULTS: Survivors were more likely to report nonadherence than the comparison group (23.8% vs 14.3%; P < .001). Survivors were also more likely to report that they could not afford medication, asked their physician for lower cost medication, and used alternative therapies in the previous year to save money. Uninsured survivors were more likely to report nonadherence than those privately insured (odds ratio [OR], 3.19; 95% confidence interval [CI], 1.67-6.09). Non-Hispanic black survivors, those who reported greater mental distress, and those with greater comorbidities reported nonadherence more often than their counterparts. Survivors reporting a usual source of care were at a lower risk of nonadherence than those without it (OR, 0.39; 95% CI, 0.18-0.82). CONCLUSIONS: Cost-related communication with survivors may be needed to increase medication adherence. Uninsured and sicker survivors should receive regular screening to improve adherence. Future work should evaluate adherence for specific drugs. Cancer 2017;123:2726-34. © 2017 American Cancer Society.