Health care experiences of long-term survivors of adolescent and young adult cancer

Purpose: Evaluate health care access and experiences with care among long-term survivors of adolescent and young adult (AYA) cancer relative to a comparison group in the USA. Methods: The 2008 to 2012 Medical Expenditure Panel Surveys identified 1163 survivors of cancer, diagnosed ages 15–39, current ages 20–64, who were at least 5 years after diagnosis. A comparison group without cancer was matched using age, sex, and other characteristics. Primary outcomes included having ≥1 visit to doctor’s office/clinic in the previous year and perceived health care quality (0 = worst to 10 = best; categorized as low (0–4), intermediate (5–7), and high (8–10)). Other experience-related outcomes (e.g., having adequate time with providers and providers show respect) were also evaluated. Bivariate analyses compared these outcomes between survivors and the comparison group. Multivariable logistic regressions identified survivor-level factors associated with health care visits and quality. Results: Survivors had ≥1 visit more often (82.1 vs. 75.8 %, p = 0.005) yet rated their health care quality lower (low or intermediate 30.7 vs. 23.6 %, p < 0.001) than the comparison group. Fewer survivors reported always having enough time with providers (41.7 vs. 54.6 %, p < 0.001) and that providers always show respect (57.5 vs. 67.7 %, p = 0.002). Uninsured survivors were less likely to have ≥1 visit (odds ratio (OR) = 0.26, 95 % confidence interval (CI) 0.17–0.40, p < 0.001) and rated their health care quality lower (OR = 0.25, 95 % CI 0.13–0.48, p < 0.001) than privately insured. Many other factors were associated with visits and quality. Conclusion: Survivors of AYA cancer reported more health care visits but worse health care experiences than individuals without cancer. Targeted interventions that may improve survivors’ experiences with health care should be evaluated.