Organization of multidisciplinary long-term follow-up after childhood cancer in Belgium: a qualitative study of the paediatric haemato-oncology institutions

Details

Supervisors

Piette Caroline ; Van Aelst Fabienne ; Antoine-Poirel Hélène

Faculty

Faculté de santé publique

Degree label

Master [120] en sciences de la santé publique, à finalité spécialisée

Abstract

enBackground: Childhood cancer survival rates have considerably improved over recent decades, resulting in a growing population of childhood cancer survivors (CCS) requiring lifelong and adapted long-term follow-up (LTFU) care. LTFU aims to monitor and manage late effects of cancer and its treatments while addressing survivors’ physical, psychological, and social needs. However, important challenges remain regarding the organisation, coordination, and implementation of survivorship care, particularly during transition from paediatric to adult healthcare services. Objectives: This study aimed to explore the barriers and facilitating factors influencing the implementation and harmonisation of LTFU care for CCS in Belgium from the perspective of healthcare professionals (HCPs). Methods: A qualitative study was conducted using multidisciplinary focus groups and semi-structured interviews involving HCPs from the 7 Belgian paediatric hemato-oncology institutions. Data were analysed using thematic analysis guided by the Consolidated Framework for Implementation Research (CFIR). Results: The findings highlighted the strong commitment of HCPs involved in survivorship care and the importance of multidisciplinary, holistic, and patient-centred approaches within paediatric settings. Important variability between institutions was identified regarding transition practices, organisation of follow-up, communication pathways, involvement of general practitioners (GPs), and availability of dedicated survivorship structures. Transition from paediatric to adult care emerged as a particularly complex process involving organisational, relational, and emotional dimensions. Participants additionally reported structural barriers including limited time, staffing, funding, and insufficient adult survivorship resources. Facilitating factors included progressive patient education, multidisciplinary collaboration, structured transition consultations, survivorship passports, and increasing involvement of GPs in shared-care models. Conclusion: This study highlights the complexity of implementing sustainable and coordinated LTFU care for CCSs in Belgium. The findings reinforce the need for greater harmonisation of survivorship care practices, stronger collaboration between paediatric, adult, and primary care providers, and increased institutional support to ensure accessible, personalised, and lifelong follow-up care for CCSs.