Abstract
Purpose
The National Standards for Cancer Survivorship Care propose health system policies to develop survivorship programs. Little is known about the utilization, barriers, and facilitators of survivorship care amongst adolescent and young adult (AYA: ages 15-39 at diagnosis) cancer survivors.Methods
Participants included AYAs who were 1-5 years post-treatment and eligible to participate in a parent study testing a digital health intervention. The electronic health record (EHR) was queried to determine who had been seen in the Survivorship Clinic, and qualitative interviews were conducted with a randomly selected subset of those participants.Results
Of 836 survivors eligible for the parent trial, only 38 (4.5%) were seen in the Survivorship Clinic (86.8% female, 71.1% White, 86.8% not Hispanic, 65.7% breast cancer). A subset enrolled in the parent trial (n = 147) was screened for approach for qualitative interviews. Forty interviews were completed (mean age = 38.4 (SD = 4.4), 50% breast cancer, 78% female, 83% White, 83% Non-Hispanic White, 92% college or more education) with only one seen in the Survivorship Clinic. Participants identified barriers including lack of awareness, avoidance, and lack of time. Referrals from care teams, information about services provided, and telehealth were identified as factors that would have facilitated them seeking survivorship care.Conclusions
Few AYAs sought survivorship services that could assist them in addressing the late effects of their cancer diagnosis and treatment.Implications for cancer survivors
Lack of awareness of the survivorship clinic was the most significant barrier, and a referral from their oncology care team would have facilitated them scheduling a visit.