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

Resumo original em inglês

O que aconteceu

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.

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.

O que encontraram

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.

Por que isso importa

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.

Resumo publicado sob licença CC BY. A tradução para o português ainda não chegou a este estudo.