Optimising survivorship care in Hodgkin's lymphoma: Aligning practice with Ireland's AYA cancer framework

With increasing numbers of cancer survivors living well beyond treatment, national and international policy strongly emphasises self-management as a core component of survivorship care. Hodgkin's Lymphoma (HL) is one of the most common cancers in Adolescents and Young Adults (AYAs) in Ireland, with five-year overall survival exceeding 95%. However, survivors face a tenfold increased risk of death due to recurrence and late effects, which may emerge up to 20 years post-treatment, often after structured follow-up ends. Supporting self-management is therefore critical to long term health.

A descriptive qualitative study used purposive sampling to recruit multidisciplinary healthcare professionals involved in AYA HL care in Ireland. Semi-structured interviews explored perspectives on information provision, survivorship planning, and self-management. Data were transcribed and analysed using thematic analysis.

Fifteen participants took part, including radiation oncologists (n = 4), medical oncologists (n = 2), haematologists (n = 2), clinical nurse specialists (n = 3) and allied healthcare professionals (n = 4). Five themes emerged: the context of AYA HL care; information provision and communication; development of self-management; professional roles and relationships, rehabilitation and recovery following treatment. Care was evolving but fragmented, with inconsistent AYA pathways. Survivorship discussions were often delayed until treatment completion. Access to allied health professionals was reactive and referral-based and are the professions most aligned with self-management policy, delivering structured interventions. Survivorship planning varied between structured and informal approaches.

Survivorship in AYA cancer care remains under-structured and medically focused. Fragmented pathways and limited multidisciplinary access restrict opportunities to develop the self-management skills which are crucial for long term health. Earlier integration of self-management and improved access to allied health services may better align practice with policy goals.

Findings suggest partial alignment with survivorship policy. Greater investment in structured survivorship planning, consistent information provision, and expansion of multidisciplinary roles-particularly AYA-specific allied health services-is needed.