Adolescents and young adults with predominantly low grade primary central nervous system tumors: patient reported socioeconomic outcomes and health-related quality of life ten years after diagnosis

CONTEXT: Adolescents and young adults (AYAs) diagnosed with primary central nervous system tumors (PCNST) often face long-term socio-economic challenges and reduced health-related quality of life (HRQoL). OBJECTIVE: This study aims to evaluate the long-term socio-economic outcomes and HRQoL of AYAs more than ten years after diagnosis. METHODS: A national, retrospective study conducted between 2019 and 2022, including AYAs aged 15–25 diagnosed with PCNST in 2009–2010, identified through the French Brain Tumor Database. Socio-economic data and HRQoL were assessed using a structured questionnaire and the Short Form-12 (SF-12) Health Survey. Descriptive statistical analyses were performed. RESULTS: Questionnaires were available for 70 patients. Educational level improved over time, but 11.4% still lacked a diploma. While 90% were employed, 45% earned €1500–€2500 per month, and 36.7% earned less than €1500 per month. Workplace accommodations were rarely implemented despite needs. HRQoL assessments showed high physical functioning scores (mean: 85.61), but low vitality scores (mean: 35.82). The mean Physical Component Summary and the mean Mental Component Summary are lower to the general population aged 18–44 in France, respectively 50.6 (SD: 9.1) and 43.6 (SD:12.25) showing a poor physical and a very poor mental HRQoL for AYAs survivors. DISCUSSION: Despite resilience in education and employment, AYAs surviving PCNST face persistent socio-economic difficulties and poor mental HRQoL. Tailored interventions, including increased awareness of support resources and comprehensive care strategies, are needed to improve their long-term outcomes and facilitate better integration into society. CLINICAL TRIAL NUMBER: Not applicable.