Barriers and facilitators associated with long-term follow-up care for childhood, adolescent, and young adult cancer survivors: a systematic review

Abstract

Background: Optimal long-term follow-up (LTFU) care for survivors of childhood, adolescent and young adult (CAYA) cancer can improve or maintain their quality of life by prevention and early treatment of late effects. However, optimal LTFU care is not provided to all CAYA cancer survivors. This systematic review sought to identify associated barriers, facilitators and other factors of LTFU care for CAYA cancer survivors worldwide.

Methods: We included barriers and facilitators from a previously published guideline in 2017, and performed a systematic search using PubMed/Medline to identify studies between 1-1-2017 and 5-6-2025 examining barriers, facilitators and other factors associated with LTFU care from the perspectives of CAYA cancer survivors, diagnosed with cancer ≤25 years of age, healthcare providers (HCPs), and hospital managers involved in the provision of LTFU care for CAYA cancer survivors. Qualitative and (semi)quantitative (survey) studies with multivariable analyses were eligible for inclusion. Standardised evidence tables were made independently by one author and checked by another author to extract relevant information.

Results: The search yielded 4,677 unique records, of which 230 were selected for full-text screening and 51 articles were included in this systematic review. Twenty-two studies were qualitative, twenty-two were quantitative and seven used a mixed methods design. The previous published guideline provided 19 barriers and 5 facilitators until 2017. Within the current review, 85 barriers, 63 facilitators, and 23 other factors were reported. Main barriers included lack of knowledge, information and awareness of LTFU care, lack of resources, poor transition from paediatric to adult care, and the lack of national/regional LTFU care programmes or clinics. Main facilitators included a treatment summary/survivorship care plan, involvement of multidisciplinary specialists, education to improve late effects knowledge, a clear contact/information point, and improved communication. Regarding other factors, treatment with radiation only, older attained age, age at diagnosis, and non-white descent were most frequently associated with less LTFU care. The main factor associated with more LTFU care by survivors was the number of late effects.

Conclusions: We encourage raising awareness, provision of appropriate information, treatment summaries and survivorship care plans, and advocacy for supportive policies and funding in order to optimise LTFU care and facilitate engagement for CAYA cancer survivors.

Supplementary Information: The online version contains supplementary material available at 10.1186/s12913-025-13363-8.

Keywords: Aftercare; Barriers and facilitators; Cancer survivors; Factors; Long-term follow up care; Paediatric oncology; Survivorship.

Fig. 1

Flowchart of included studies