Medical care in adolescents and young adult cancer survivors: what are the biggest access-related barriers?

Abstract

Purpose Adolescent and young adult (AYA) cancer survivors experience barriers to utilizing healthcare, but the determinants of cancer-related medical care of AYAs has not been fully explored. Methods We studied factors associated with medical care utilization among 465 AYA cancer survivors in the AYA Health Outcomes and Patient Experience Study (AYA HOPE), a cohort of 15 to 39 year-olds recently diagnosed with germ cell cancer, lymphoma, sarcoma, or acute lymphocytic leukemia. Descriptive statistics and multivariate logistic regression methods were used. Results Most AYA cancer survivors (95%), who were 15–35 months post diagnosis, received medical care in the past 12 months and 17% were undergoing cancer treatment. In multivariate analyses, compared with AYAs with no cancer-related medical visits in the previous year, AYAs receiving cancer-related care were more likely to currently have health insurance (odds ratio (OR) = 4.9; 95% confidence interval (CI): 1.7–13.8) or have had health insurance in the past year (OR= 4.0; 95% CI: 0.99–16.3). Cancer recurrence, lacking employment and negative changes in self-reported general health were associated with ongoing cancer treatment versus other cancer-related medical care. 11% of all AYAs and 25% of AYAs who did not receive medical care in the past 12-months lost health insurance between the initial and follow-up surveys. Conclusion AYA cancer survivors with health insurance were much more likely to receive cancer-related medical care than those without insurance. Implications for Cancer Survivors Despite the need for post-treatment medical care, lacking health insurance is a barrier to receiving any medical care among AYAs.

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

“…To counter these challenges, survivors may need regular medical surveillance. Yet, many survivors of AYA cancer report unmet supportive and health care needs [9][10][11]. Furthermore, survivors lacking insurance may face greater challenges in receiving medical care [10].…”

“…Yet, many survivors of AYA cancer report unmet supportive and health care needs [9][10][11]. Furthermore, survivors lacking insurance may face greater challenges in receiving medical care [10]. Addressing the needs of survivors of AYA cancer and developing care models to improve their experiences is an important area of national research [12][13][14].…”

“…Since then, the AYA Health Outcomes and Patient Experience (HOPE) study has published several reports detailing poor healthrelated quality of life and unmet needs among AYAs with cancer [9,10,16,17]. They found significantly worse health-related quality of life among survivors than healthy individuals and that over 50 % of survivors reported unmet information needs regarding their cancer treatment and risk of cancer recurrence [9,18].…”

Adolescent and Young Adult Cancer Survival

“…While brain and central nervous system (CNS) cancers affect pediatric, AYA, and adult populations, proportions of the histological subtypes are often different between older and younger patient groups with pilocytic astrocytomas more common in pediatric populations, and glioblastomas more common with increasing age (1). There are many explanations for cancer survival differences in the AYA age group, including suggestions that the biology of breast and colon cancer may be different in AYAs (6), access to care (8,9), participation in clinical trials and whether the treatments are directed at children or adult populations (6,10), contrasting improvement in outcomes compared with younger and older patients (11), economic (12) and psychosocial issues (13).…”

Patient Navigation Preferences for Adolescent and Young Adult Cancer Services by Distance to Treatment Location

“…[2][3][4] AYAs are often uninsured, have limited healthcare access, and experience delays in cancer diagnosis. 1,5,6 These challenges may be exacerbated for AYAs living far from their cancer treatment center. 7 Patient navigators provide coordinated, patient-centered services that guide individuals through complex medical systems and to community resources.…”