Transition needs and preferences identified during peer visits to three European best-practice CAYA cancer Long-Term Follow-Up care centres: An EU-CAYAS-NET project
<h2>Abstract</h2><h3>Background</h3> A successful transition from child-centred to adult-oriented healthcare for survivors of childhood and adolescent cancer is essential to help them engage in lifelong surveillance in survivorship care. Information on their needs and preferences for the transition process is needed to identify key components for a successful transition. <h3>Objective</h3> To describe the transition needs and preferences of young cancer survivors, their parents, and healthcare providers. <h3>Methods</h3> Three in-person peer visits to best-practice long-term follow-up care centres in Europe were conducted. In these visits, the needs and preferences of young cancer survivors, their parents, and healthcare providers were collected through interactive sessions and structured documentation. The outcomes were analysed inductively using thematic analysis, resulting in a list of unique needs and preferences. <h3>Results</h3> Sixty-five participants, including 32 survivors, six parents, 21 healthcare providers, and six researchers, shared 188 needs and preferences, leading to the identification of 58 distinct transition needs and preferences. Participants stressed the need for structured, patient-centred transition processes with clear coordination and planning, following a holistic approach. Key support needs include lifestyle, psychosocial, and employment assistance. Improved access to reliable information, tailored education, and readiness-based transfers were emphasised. <h3>Conclusion</h3> Our findings highlight the need for personalised and ongoing coordination and support for survivors and their families during transition. Strengthening informational and educational transition resources are crucial to address gaps experienced by patients and caregivers. These insights will be implemented into the evidence-based European transition guideline from the EU-CAYAS-NET project.
Authors
- Renée L. Mulder (ORCID: https://orcid.org/0000-0002-0414-9561)
- Kerstin Krottendorfer (ORCID: https://orcid.org/0000-0001-9231-3781)
- Helena J. H. van der Pal (ORCID: https://orcid.org/0000-0003-2253-2115)
- Urška Košir (ORCID: https://orcid.org/0000-0003-2132-4090)
- Carina Ursula Schneider (ORCID: https://orcid.org/0000-0003-2336-5849)
- Katie Rizvi (ORCID: https://orcid.org/0000-0003-1706-5348)
- Barbara Brunmair (ORCID: https://orcid.org/0000-0002-7742-0623)
- Ulrike Leiss (ORCID: https://orcid.org/0000-0003-2605-8334)
- Jeroen te Dorsthorst
- Ismay A E de Beijer (ORCID: https://orcid.org/0009-0000-5891-2959)
- Jaap G. den Hartogh (ORCID: https://orcid.org/0009-0000-8060-4725)
- Begonya Nafría (ORCID: https://orcid.org/0000-0002-4494-3663)
- Esther Lasheras Soria (ORCID: https://orcid.org/0009-0003-1905-0032)
- Jikke Wams (ORCID: https://orcid.org/0009-0006-0873-1096)
- Cherine Mathot
- Marie-Therese Gubi
Institutions
- Hospital Sant Joan de Déu Barcelona (ES)
- Utrecht University (NL)
- Nierstichting (NL)
- Princess Máxima Center (NL)
- Sant Joan de Déu Research Foundation (ES)
- CURE Childhood Cancer (US)
- Stichting tot Steun VCVGZ (NL)
- Medical University of Vienna (AT)
Publication Details
- Journal
- EJC Paediatric Oncology
- Published
- 2025-11-22
- DOI
- https://doi.org/10.1016/j.ejcped.2025.100479
- Citations
- 1
- Primary Topic
- Adolescent and Pediatric Healthcare
- Type
- article
- Field-Weighted Citation Impact
- 3.12
Funders
- Gojo Industries
- European Commission
- Universität Wien
- Medizinische Universität Wien