A Roadmap to Survivorship: Optimizing Survivorship Care Plans for Adolescent and Young Adult Cancer Survivors.

PURPOSE: Young adult cancer patients have complex medical and psychosocial needs throughout treatment. Once treatment ends, few young adult cancer survivors (YACS) receive adequate survivorship care. Many YACS do not continue with oncology care after treatment ends. The purpose of this study was to discover the views YACS held about survivorship care and to design age-appropriate survivorship care plans (SCPs).

METHODS: Twenty-seven YACS (n = 27) participated in a group discussion focusing on their post-treatment experience. The concept of SCPs was introduced and participants provided information on how their care was managed after the completion of their treatment, what factors played a role in their oncological follow-up care, and the potential utility of a SCP in the management of their follow-up survivorship care. SCPs were developed for each participant and feedback requested.

RESULTS: SCPs required 45-180 minutes to complete. Barriers to continued follow-up included: loss of health insurance, poor communication with their oncologist once treatment ended, and ongoing adjustment challenges to work, school, and home life. YACS requested more support for psychosocial issues post-treatment, and more information about long- and late-term side effects from treatment.

CONCLUSIONS: Further research in the utility of SCPs among YACS is warranted as they may have a significant role for YACS. Information on long- and late-term side effects, follow-up care schedule, psychosocial support, and adolescent and young adult-specific resources must be clearly delineated in SCPs.