Background: Whilst 5-year relative survival for Central Nervous System (CNS) cancers in the Australian adolescent and young adult (AYA) population has improved over time, the significantly increased survival in common AYA cancers like melanoma, thyroid and leukaemia overshadow poorer outcomes for CNS cancers. As one of the leading causes of cancer-rated deaths and morbidity in AYAs, CNS tumours require improved clinical management.
Aim: The aim of this retrospective analysis was to review epidemiology and outcomes of CNS tumours (low and high grade) in the Queensland AYA cohort 2014-2022. Surgical quality indicators, comorbidities, engagement with psychosocial support and surveillance mechanisms were investigated.
Method: De-identified unit record data were sourced from the population-based Queensland Oncology Repository, containing linked data from multiple sources. Eligible people were 15-24 year olds diagnosed with a primary brain tumour. Children aged 7-14 years diagnosed with a primary brain tumour and who survived to transition into the AYA cohort were also included. Treatment and surveillance information were available for each patient.
Results: 397 AYAs met criteria for the analysis. 75% of patients with high grade tumours and 97% with low grade tumours had survived up to 31 December 2022.
58% of the cohort proceeded to resection of their tumour. 33% of the cohort had at least one comorbidity post treatment (gross motor deficit, cranial nerve deficit or endocrinopathies).
Of the cohort 6% had a genetic syndrome; 4% had more than one cancer diagnosis, and 8% identified as First Nations people.
Conclusion: There is one new diagnosis of a CNS tumour per week in the AYA cohort of Queensland. AYAs with CNS tumours have poorer outcomes and unique neurocognitive and psychosocial needs compared to AYAs with non-CNS cancers and the general AYA population. This warrants specific focus on improving consistency and quality of their care and treatment.