Young cancer survivors face an increased risk of long-term health complications, yet follow-up often declines once paediatric follow-up care ends. A recent evidence-based guideline from the EU-CAYAS-NET consortium sets out practical steps for a structured, coordinated transition to long-term adult survivorship care, helping young people and families manage lifelong health needs, as Jikke Wams and Renée Mulder explain.

Survival rates for childhood and adolescent cancers have improved dramatically thanks to optimised and novel therapies. Yet this success brings a new challenge as many survivors face significant long-term health risks linked to previous treatment, including organ dysfunction, secondary malignancies and psychosocial issues. Lifelong medical and psychological surveillance is therefore essential.

Despite this, engagement with long-term follow-up care declines sharply after leaving paediatric services. Too often, young people experience an abrupt transfer rather than a structured transition, leaving them unprepared for the next phase of care and unaware of their ongoing health risks. This gap can compromise early detection of late health problems and the timely initiation of preventive strategies.

The European Network of Youth Cancer Survivors (EU-CAYAS-NET) – a youth-led network of individuals living with and beyond cancer – has initiated and supported the development of an evidence-based clinical practice guideline offering actionable recommendations for planned, coordinated and active healthcare transitions.

The project created a unique foundation for person-centred development from inception through dissemination. Its overarching aim was to support, empower and advocate for young cancer patients, survivors and their families. Part of the project was to improve knowledge and continuity of care as young cancer survivors move from short-term follow-up to lifelong survivorship care, including the transition from paediatric to adult healthcare systems.

Developing the EU-CAYAS-NET consortium guideline

To ensure the EU-CAYAS-NET consortium recommendations were robust and trustworthy, a multidisciplinary panel of clinicians, allied health professionals and patient representatives drew on three complementary data sources: a systematic review of scientific evidence from PubMed, assessed using the GRADE methodology; an examination of existing transition guidelines for young people with chronic conditions to evaluate their relevance to childhood and adolescent cancer survivors; and detailed information on the transition needs and preferences of survivors, parents and healthcare providers to ensure real-world perspectives were fully represented.

Including patient representatives at every stage and combining scientific evidence with experiential insights were critical to ensuring that the recommendations were both evidence-based and meaningful for practice.

The guideline emphasises the importance of timing and review and identifies key transfer moments – critical points in the care trajectory where responsibilities shift – as opportunities to introduce, monitor and adjust the transition process. By embedding structured review moments into care plans, healthcare teams can anticipate challenges, address gaps early and maintain engagement. Together, these recommendations transform transition from a passive moment of care handover into an active, planned process.

A dedicated transition coordinator for young cancer survivors

The recommendations on transition coordination and transition planning stand out as most impactful as they go beyond general principles and specify how the transition process should be structured to ensure continuity of care. Central to this is the appointment of a designated coordinator who oversees the entire transition process. This role provides clarity and accountability, reducing the risk of fragmented care and missed follow-up.

The recommendation for a dedicated transition coordinator was supported across all data sources: it was backed by scientific literature, featured prominently in existing evidence-based guidelines, and was strongly advocated by young cancer survivors, their families and healthcare providers.

Notably, the role does not necessarily require creating a new position. In practice, it can be assigned to an existing member of the multidisciplinary team who knows the patient and feels responsible for guiding them through a structured, planned process. The key is for one person to take ownership of preparing the young person for adult care and to ensure progress is reviewed at critical points.

Resource constraints mean flexibility is essential. In many centres, a nurse practitioner is a logical choice for the role, given their growing role in survivorship care. Where this is not feasible, any team member with medical knowledge and strong coordination skills can fulfil the role. Crucially, the coordinator must be recognised as a stable presence within the team, ensuring continuity and trust throughout the transition process.

Transition planning and multidisciplinary collaboration

Building collaboration begins with clear communication and shared responsibility. In systems with limited links, practical strategies include establishing formal referral pathways, implementing structured transition protocols and leveraging digital tools such as shared electronic health records to connect paediatric and adult teams.

Embedding transition planning in multidisciplinary meetings helps ensure alignment across specialties. When resources are constrained, appointing a transition coordinator as a stable point of contact can bridge gaps and maintain continuity. Ultimately, success depends on fostering formal and informal networks that prioritise survivor needs and enable consistent, coordinated care across services.

Childhood and adolescent cancer survivors form a highly diverse group. Cancer and its treatment can affect cognitive, emotional and social development, so a one-size-fits-all approach risks overlooking critical needs. Individualised planning enables clinicians to tailor support to a patient’s diagnosis, treatment history, current health status and psychosocial context.

Family dynamics add another layer of complexity. The degree of parental involvement and a young person’s ability to advocate for themselves vary widely. Recognising these differences is essential for fostering autonomy while maintaining appropriate support.

Personalised transition care plans are recommended as practical tools. These plans create space for meaningful conversations about preferences and expectations, such as how the young person wishes to be addressed, their vision for future care and the responsibilities they feel ready to assume.

The plans also help to identify topics that matter most to the person, as well as respecting individuality and promoting engagement while ensuring that the transition is not just a clinical process but a collaborative one as it coincides with growing up and becoming an independent adult.

Transfer readiness and changing roles during care transition

Chronological age alone is an inadequate marker of transfer readiness. The transfer should occur during a period of relative stability and ideally involve both paediatric and adult professionals.

Readiness must be assessed holistically, including evaluations of skills and knowledge gaps, emotional and psychological preparedness, growth and pubertal development, health literacy, and autonomy in managing health.

Validated general transition-readiness tools exist and can be adapted for oncology. These should incorporate indicators such as having an understanding of diagnosis and late effects of the treatment, confidence in navigating healthcare and an ability to communicate with providers. Combining structured questionnaires with conversational elements can make assessments practical and engaging.

Evidence on the effectiveness of specific transition tools remains limited, although some positive effects have been reported with resources such as transition workbooks, memory aids and telemedicine visits. What is clear, however, is the importance of providing information in accessible formats and inclusive language to ensure understanding and engagement.

Practical approaches include plain-language brochures, interactive websites, educational videos, social media peer groups and comprehensive toolkits. These resources should not only explain late effects and future health risks but also address changing roles and responsibilities as young people move towards greater autonomy. By combining clear, tailored information with flexible delivery channels, clinicians can help young cancer survivors and their families feel informed, confident and actively involved in their care journey.

Evaluating success and future priorities for supporting young cancer survivors

Too often, young cancer survivors remain unaware of what type of follow-up care awaits them after paediatric care and of the long-term consequences of their diagnosis and treatment. This lack of clarity and structured transition planning compromises their quality of life and continuity of care. Clinicians play a vital role in changing this by preparing young people and ensuring they have a clear care pathway.

The EU-CAYAS-NET consortium guideline emphasises that successful transitions require raising awareness of cancer-related risks, promoting engagement in lifelong medical follow-up and supporting navigation of complex healthcare systems.

Recognising that no single approach to transition suits all care contexts, the guideline calls for alignment among all stakeholders within the national care model. Ideally, this model is embedded in networks linking paediatric and adult specialists.

By adopting our proposed principles, clinicians can help ensure that transition becomes a proactive, coordinated process rather than an abrupt handover, thereby empowering young survivors and their families for the long term.

Evaluation of the transition process requires moving beyond process measures towards outcomes that reflect survivor experience and long-term health. Institutional-level assessments of transition services should prioritise person-centred metrics that incorporate survivor feedback, opinions and lived experiences. Key indicators include health outcomes, patient satisfaction, continuity of care, quality of transition education and planning, and measures of self-management or self-efficacy.

The next phase of our research is already underway. EU-CAYAS-NET’s legacy continues through the European Youth Cancer Network, known as YARN – another EU co-funded initiative – which has a focus on developing practical transition resources. This includes an individualised transition care plan template and piloting the implementation of our transition guideline in two European best-practice long-term follow-up centres.

Documenting this implementation pilot process will be critical for replicability, providing a roadmap for other centres to adopt similar implementation strategies and deliver care aligned with the guideline’s recommendations.

Authors

Jikke Wams MA
PhD candidate

Renée Mulder PhD
Senior scientist and guideline specialist

Both of the Princess Máxima Center for Pediatric Oncology, Utrecht, Netherlands

On behalf of the guideline contributors:

Leontien Kremer MD PhD
Principal investigator and guideline specialist

Helena van der Pal MD PhD
Senior scientist and internal medicine specialist, LATER outpatient clinic

Jaap den Hartogh MA
Patient expert and projects leader

All of the Princess Máxima Center for Pediatric Oncology, Utrecht, Netherlands

Anita Kienesberger
Chair, Childhood Cancer International Europe committee, Vienna, Austria

Katie Rizvi
Co-founder and CEO, Youth Cancer Europe, Cluj-Napoca, Romania

Katrin Scheinemann MD PhD
Division head paediatric oncology and hematology and principal investigator, Children’s Hospital of Eastern Switzerland, St. Gallen, Switzerland

Roderick Skinner MB Ch PhD
Consultant paediatric and adolescent oncologist, Great North Children’s Hospital, and honorary professor of childhood cancer at Newcastle University, Newcastle upon Tyne, United Kingdom