Background: Life-threatening illnesses in adolescents and young adults (AYA) are traumatic for patients and their families. Support services can help patients and families deal with various non-medical impacts of diagnosis, disease and treatment but AYA often fall in the gap between the paediatric service and the adult service. The aim of this study was to determine which types of support are most valued by AYA with cancer or blood disorders and their families.
Method: A discrete choice experiment (DCE). Separate experiments were conducted with AYA and their carers.
Results: Completed surveys were returned by 83 patients and 78 carers. AYA preferred emotional support for themselves (either by counsellors and/or peers), emotional support for their family, financial support and assistance returning to school/work over services relating to cultural and spiritual needs. Covariate analysis indicated female AYA were more likely than males to prefer emotional support, while males were more likely to prefer assistance returning to work/school. Carers preferred emotional support for their AYA and assistance returning to school/work. Like AYA, carers were indifferent about services relating to cultural and spiritual needs.
Conclusion: Providing the types of support services that people prefer should maximise effectiveness. Results from this DCE can inform evidence-based health policy decision making about the types of support services provided for AYA and their families, thereby informing best practice.