Adolescent and young adult cancer survivorship: A systematic review of end-of-treatment and early post-treatment

Background A framework for adolescent and young adult (AYA) survivors that addresses developmental milestones, short and long-term impacts of cancer on relationships is needed to understand the long-term consequences of cancer treatment and why AYAs do not participate in long-term follow-up care. Objectives Develop a theoretical framework of end-of-treatment and early post-treatment based on a systematic review of the literature and suggest future directions for research that derive from the review. Method A systematic review of published research from 1994 to 2014 was conducted using three databases: PubMed, CINAHL, Psych Info using search terms survivors AND end of treatment OR transition* AND cancer. Results The framework is organized along a time trajectory that includes treatment and post-treatment separated by the critical transition of end-of-treatment. The framework explores links between AYA development; changes in survivor's relationships with parents, peers, siblings, health care providers; and evidence of issues at end-of-treatment for survivors and parents. Conclusion Results from the systematic review suggest that end-of-treatment and early post-treatment are particularly challenging for survivors and parents. Five areas of future research are identified: provider behaviors that contribute to AYA's feelings of abandonment; end-of-treatment and follow-up visits; survivor and parent expectations at end-of-treatment and actual challenges in post-treatment; convergence or discordance between the AYA's and parent's concerns and how parents' concerns may conflict and thwart survivors' efforts to achieve developmental milestones; and peers' perceptions and concerns.