Despite numerous studies of AYA cancer survivors, very few studies have examined the psychosocial and psychological impacts of cancer when onset occurs during adolescence and young adulthood. Almost no studies have examined the impacts on their parent caregivers. The findings of this study support the need for early identification of psychological distress, appropriate developmental perspectives to understand AYA distress, and the need for family-based psychological assessment and interventions.

These findings indicate the importance of information needs for AYAs and their carers. The association between patient activation and information needs suggests that promoting young people's engagement with healthcare is a key opportunity within AYA care. Parent information needs and associated emotional distress additionally highlight the importance of family-centered care.

AYAs and parents had high levels of total and unmet service need, which were associated with greater emotional distress. These results highlight opportunities to re-orientate services to better meet AYA and parent needs.