Information needs of adult childhood, adolescent, and young adult cancer survivors (CAYACS): A systematic review

Objective: Childhood, adolescent, and young adult cancer survivors (CAYACS) often report cancer-related knowledge gaps. Addressing their information needs is associated with better quality of life. We aimed to explore and synthesize evidence on CAYACS’ cancer-related information needs and identify associated characteristics. Methods: Peer-reviewed articles on information needs in adult CAYACS ≥ 5 years post-diagnosis were systematically searched in PubMed, PsycINFO, and Scopus. The quality of included publications was assessed using the Mixed Methods Appraisal Tool, and results were narratively synthesized. Results: Twenty-one studies (n = 10 quantitative, n = 8 qualitative, n = 3 mixed-methods) with a total of 5624 participants (range: 14–1386 per study) were included. Between 51 % and 77 % of CAYACS had at least one information need. Needs were reported across 11 domains, including cancer-related health information (2 %-86 %), follow-up care and prevention (2 %-91 %), healthcare system interactions (9 %-36 %), living a healthy lifestyle (4 %-60 %), psychosocial well-being and support (12 %-40 %), sexual health (<1 %-32 %), finances (2 %-50 %), relationships (2 %-20 %), education and employment (<1 %-18 %), insurances (28 %-47 %), and peer support (7 %-35 %). The highest prevalences were observed in follow-up discussions on current health (92 %) and late effects (19 %-86 %). Female sex, older age at study, lower educational attainment, poorer mental and physical health, longer time since diagnosis/treatment, central nervous system tumor diagnosis, and lack of written information were associated with more information needs. Conclusions and practice implications: Adult CAYACS report significant information needs years after treatment, particularly regarding cancer-related health information, follow-up care and prevention, and lifestyle. Addressing these needs with age-appropriate, individualized information may improve their quality of life. Electronic and mobile health tools are promising methods to provide such support.