Belgium Maps a Blueprint for Cancer Care That Grows Up With Its Patients

Adolescents and young adults diagnosed with cancer occupy an awkward middle ground in modern oncology. They are too old for the paediatric wards where most of the expertise in childhood malignancies sits, yet too young for the adult services designed around patients decades their senior. A new study from Belgium, published in BMC Health Services Research, has mapped exactly how the country’s care for this group falls into the gaps, and what it would take to close them. Drawing on the perspectives of 78 stakeholders spanning policymakers, hospital professionals and patients themselves, the research team at Sciensano and the University of Antwerp has produced one of the most detailed contextual analyses to date of how a national health system organises cancer care for people aged 16 to 35.

The study, led by Fabienne Van Aelst and colleagues, used a mixed-methods design that combined interviews, focus groups and a structured workshop with two complementary questionnaires: one completed by 68 hospitals and another by 27 general practitioners. Rather than simply cataloguing problems, the researchers anchored their analysis in the Consolidated Framework for Implementation Research, or CFIR, a widely used model that breaks down the contextual determinants of any health intervention into domains such as outer setting, inner setting, characteristics of individuals and implementation process. This framework allowed the team to systematically identify which factors accelerate the rollout of dedicated adolescent and young adult cancer services and which ones stall them, using a combined deductive-inductive approach that let both the framework’s categories and unexpected themes emerge from the data.

What emerged first from the analysis was a clear consensus on what good care for this age group should look like. Participants described adolescent and young adult cancer care as fundamentally holistic, addressing not only the physical disease but the psychosocial and emotional turbulence that a cancer diagnosis inflicts at a life stage defined by education, employment, relationships and identity formation. The envisioned care package extends well beyond chemotherapy and surgery: it includes fertility preservation counselling before gonadotoxic treatment, genetic counselling where hereditary risk is suspected, structured access to clinical trials, and practical or administrative support for navigating insurance, studies and work. These components, the stakeholders agreed, must be delivered in a developmentally adapted way, recognising that a 17-year-old and a 33-year-old may share a diagnosis but not a life context.

Underpinning this vision, the study found, is a demand for multidisciplinary care delivered through structured collaboration within and between hospitals. Belgium’s cancer landscape includes centres with paediatric haemato-oncology expertise, which historically treated adolescents, and adult oncology services that absorb young adults, and the boundary between them has long produced inconsistent referral patterns. Participants emphasised that effective care depends on dedicated multidisciplinary teams with designated points-of-contact, so that patients and families always know who is coordinating their trajectory. Without such anchors, the analysis suggests, young patients risk falling between paediatric and adult protocols, losing continuity at precisely the moments when treatment decisions are most consequential.

The question of who should steer this coordination led the researchers to a central finding: national AYA policy, including harmonised care pathways, was viewed as essential to reduce the variability in practice that currently separates hospitals and regions. Belgium’s federal structure, in which health competencies are largely regionalised, complicates the task. A harmonised national program would set common standards for what constitutes adequate adolescent and young adult cancer care, define referral criteria, and ensure that a patient’s postcode does not determine whether they receive fertility counselling or trial access. Yet the study’s title signals its most nuanced conclusion: national strategy must be balanced with flexible local solutions, because rigid central mandates that ignore the realities of individual hospitals risk being implemented on paper only.

That balance points toward a specific organisational architecture. The researchers recommend harmonised referral pathways organised through a hub-and-spoke hospital network, a model in which specialised hub centres concentrate AYA-specific expertise, multidisciplinary teams and trial access, while spoke hospitals maintain proximity to the patient’s home and handle day-to-day care under agreed protocols. This configuration preserves the advantages of both concentration and decentralisation: patients gain access to specialised expertise without being forced to travel long distances for every appointment, and local teams retain the flexibility to adapt services to their populations. The hub-and-spoke logic, long applied in stroke care and paediatric surgery, is here proposed as the backbone of a coherent national AYA framework, with clear national and regional guidance defining the responsibilities of each node.

One of the study’s most striking findings concerns primary care. General practitioners, who in Belgium act as gatekeepers to specialist care and follow patients across the entire disease course, were identified as important but insufficiently integrated in the AYA cancer trajectory. The GP questionnaire responses revealed that family doctors often lack clear information about where to refer young patients and what AYA-specific services exist, and that communication between hospital teams and primary care remains episodic rather than structured. Because adolescents and young adults frequently present with non-specific symptoms and are otherwise healthy, the GP is often the first and only clinician to see the early signals; delayed recognition at this interface has documented consequences for outcomes. Meaningfully integrating primary care, the authors conclude, is not an optional add-on but a precondition for effective implementation.

The study’s recommendations operate at two levels. At the policy level, they call for a coherent organisational framework with clear national and regional guidance, harmonised referral pathways and sustainable financing for dedicated AYA teams. At the hospital level, they point to the establishment of designated points-of-contact, structured collaboration agreements between paediatric and adult oncology departments, and internal protocols for fertility counselling, psychosocial screening and trial referral. The implementation science framing matters here: by using CFIR, the team could distinguish between barriers rooted in the outer setting, such as fragmented policy and funding structures, and those rooted in inner settings, such as hospital cultures and staffing constraints, allowing recommendations to be targeted rather than generic.

Beyond Belgium, the authors argue that adolescent and young adult cancer care illustrates a needs-based, trans-age approach with implications far wider than one age bracket. The same logic, organising services around the specific biological, developmental and psychosocial needs of a population rather than around arbitrary age cut-offs, applies to chronic diseases and to rare cancers that demand specialised expertise no single centre can provide in isolation. A 16-to-35 cancer program is, in this sense, a test case for how health systems can build flexible, needs-driven networks that transcend the traditional paediatric-adult divide, a divide that also complicates care for congenital heart disease, cystic fibrosis and other conditions bridging childhood and adulthood.

The findings arrive at a moment when several European countries are formalising AYA oncology programs, and Belgium’s experience offers a cautionary and constructive lesson in equal measure. Fragmented services persist not because anyone disputes their value, but because implementation depends on contextual factors, policy coherence, inter-hospital trust, primary care integration, that no single actor controls. The study’s contribution is to make those factors explicit, giving policymakers and healthcare professionals an evidence-based map for building a harmonised national AYA care program that is ambitious in its standards yet realistic about local adaptation. For the young patients navigating cancer at the most formative stage of their lives, that combination of coherence and flexibility may prove to be the difference between falling through the cracks and being caught by a system designed, finally, with them in mind.

Subject of Research: Contextual factors shaping the implementation of integrated cancer care for adolescents and young adults in Belgium

Article Title: Contextual analysis of adolescents and young adult cancer care in Belgium: balancing national strategies with flexible local solutions

Article References: Van Aelst, F., Moga Ndassi, C., Piette, C., Van Hal, G., & A. Poirel, H. (2026). Contextual analysis of adolescents and young adult cancer care in Belgium: balancing national strategies with flexible local solutions. BMC Health Services Research. https://doi.org/10.1186/s12913-026-15498-8

Image Credits: AI Generated

DOI: 10.1186/s12913-026-15498-8

Keywords: adolescent and young adult oncology, cancer care, Belgium, health services research, implementation science, CFIR, hub-and-spoke network, primary care integration, multidisciplinary teams, health policy, fertility preservation, clinical trial access