Adverse health outcomes and health-related quality of life (HRQoL) among long-term adolescent and young adult (AYA) brain tumour survivors: results from the population-based SURVAYA study.

PURPOSE: Adolescent and young adult (AYA) malignant brain tumour (BT) survivors are at risk of adverse health outcomes, which may impact their health-related quality of life (HRQoL). This study aimed to investigate the (1) prevalence of physical and psychological adverse health outcomes, (2) the HRQoL, and (3) the association of adverse health outcomes and HRQoL among long-term AYA-BT survivors. Adverse health outcomes and HRQoL were compared to other AYA cancer (AYAC) survivors.

METHODS

A cross-sectional secondary data analysis of the SURVAYA study among 133 AYA-BT and 3877 AYAC survivors was conducted. Participant self-reported adverse health outcomes and HRQoL scores were analysed and compared between the two populations. Associations with HRQoL were assessed using linear regression modelling with AIC-based backward elimination.

RESULTS

AYA-BT survivors faced significant issues of fatigue (47.6%), future uncertainty (45.2%), and medical conditions like vision (34.4%), speech, taste, or smell (26.2%) impairments, cancer recurrence, and metastasis (25.4%). Neurocognitive symptoms were identified as BT-specific issues (13.6-33.6%). Compared to AYAC survivors, AYA-BT survivors reported significantly (p < 0.05) lower functioning scores on the role, cognitive, emotional, and social HRQoL, with cognitive (56.0%) and emotional (40.0%) domains being the most affected. Adverse health outcomes were negatively associated with HRQoL, ranging from small to large clinical relevance.

CONCLUSION

Long-term AYA-BT survivors were identified as a highly burdened population, affected by multifaceted issues and multidimensional detriments in HRQoL years beyond their cancer diagnosis. This study highlights the necessity of long-term follow-up and a holistic, multidisciplinary approach to survivorship care to ultimately improve the quality of AYA-BT survivorship.