Identifying concerns and needs in AYA survivors of pediatric cancer: a scoping review

识别青少年及青年儿童癌症幸存者的顾虑和需求:一项范围界定综述

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Abstract

BACKGROUND: Adolescent and young adult survivors of pediatric cancer (AYA-CCS) require specialized, age-appropriate care throughout their lives. This scoping review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) to identify and map self-reported difficulties, concerns, and needs among AYA-CCS. METHODS: A comprehensive search was conducted in PubMed, Scopus, Web of Science, and EBSCOhost (PsycINFO and CINAHL) for articles published between 2014 and 2024. Eligible studies included first-person data from AYA-CCS (aged 15-39 years), addressing their cancer-related difficulties, concerns, or needs. Studies using qualitative, quantitative, or mixed methods were considered. Two reviewers independently screened studies and resolved discrepancies through discussion. RESULTS: We screened 1,247 records, of which 24 studies met the inclusion criteria. The findings were classified into two main dimensions: (1) Concerns, including psychological burden, long-term effects, infertility and its impact on relationships, transition of care, fear of recurrence, and social, professional, and financial challenges; and (2) Needs, including tailored information, psychological support, and communication challenges. CONCLUSION: This scoping review highlights the multiple challenges faced by AYA-CCS, with emphasis on psychological burden. Survivors report needs related to information, psychological support, and communication. Flexible, age-adapted psychoeducational approaches may be beneficial. Involving survivors in program design could enhance relevance. Stratified research by age or developmental stage is essential to align care with evolving needs. A lack of standardized AYA-CCS definitions was identified, underscoring the need for uniform criteria to strengthen future research and care.

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