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.

Center for Pediatric Oncology and Hematology Vilnius University Hospital Santaros Klinikos Vilnius Lithuania

Childhood Cancer International Vienna Austria

Department of Clinical Sciences Lund Lund University Skane University Hospital Paediatric Lund Sweden

Department of Hematology Oncology IRCCS DOPO Clinic Istituto Giannina Gaslini Genova Italy

Department of Hematology Radboud University Medical Centre Radboud Institute for Health Sciences Nijmegen the Netherlands

Division of Childhood Cancer Epidemiology Institute of Medical Biostatistics Epidemiology and Informatics German Childhood Cancer Registry University Medical Center of the Johannes Gutenberg University Mainz Mainz Germany

Faculty of Health Sciences and Medicine University of Lucerne Lucerne Switzerland

Great North Children's Hospital Translational and Clinical Research Institute Royal Victoria Infirmary Wolfson Childhood Cancer Research Centre Newcastle United Kingdom

Great Ormond Street Hospital for Children NHS Foundation Trust London UK

Hospital Universitario y Politécnico La Fe Valencia Spain

International Clinical Research Center St Anne's University Hospital Brno Czech Republic

Paediatric Oncology and Haematology Universitaetsklinikum Schleswig Holstein Clinic for Children and Adolescents Campus Luebeck Luebeck Germany

PanCare Jacobus Bellamylaan 16 Bussum 1401 AZ The Netherlands

Pediatric Hematology and Oncology University Hospitals Leuven KU Leuven Leuven Belgium

Princess Máxima Center for Pediatric Oncology Heidelberglaan 25 3584 CS Utrecht The Netherlands

Princess Máxima Center for Pediatric Oncology University Medical Center Utrecht Wilhelmina Children's Hospital Utrecht The Netherlands

St Anna Children's Hospital Vienna Austria Department of Paediatrics and Adolescent Medicine Johannes Kepler University Linz Kepler University Hospital Linz Austria

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