Adolescent and young adult perceptions of cancer survivor care and supportive programming

Background Improvements in cancer therapy have led to an increasing number of adolescent and young adult (AYA) survivors of childhood cancers. Many survivors have ongoing needs for support and information that are not being met. Objective To conduct a program evaluation to identify AYAs' perceptions of survivor care services. Methods Using a community-based approach, 157 AYA childhood cancer survivors (aged 15-30 years) completed a program evaluation survey to assess perceptions of the importance of survivor patient care services and supportive programming using a Likert scale (1, Not At All Important; 2, Of Little Importance; 3, Somewhat Important; 4, Important; 5, Very Important). Results Receipt of a medical summary was ranked as the most important survivor patient care service (mean, 4.5; SD, 0.91). 70% of respondents reported interest in late-effects education. Informational mailings were the most valued form of supportive programming and were endorsed by 62% of AYAs. Older survivors were more likely to value workshops (P = .01-0.05), whereas those aged 19-22 years valued weekend retreats (P < .01) and social activities (P < .01). Survivors of brain/CNS tumors were more likely to value social activities (P = .03) and support groups (P = .03), compared with leukemia survivors. Limitations Contact information from the hospital tumor registry was used, which limited the number of correct addresses. Conclusion The greatest care needs reported by AYA survivors of childhood cancer are services such as generation of a medical summary, late-effects education, and survivor-focused follow-up care, which are provided through cancer survivor programs. Development of additional programming to engage and further educate and encourage AYA survivors will be important to reinforce their adherence with survivor care throughout adulthood.