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 - Report - MDSpire
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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
Long-Term Socioeconomic and Quality of Life Outcomes in AYAs with Low-Grade CNS Tumors
Overview
This study evaluated adolescents and young adults (AYAs) diagnosed with low-grade primary central nervous system tumors (PCNST) 10 years post-diagnosis, focusing on socioeconomic outcomes and health-related quality of life (HRQoL). Findings highlight persistent socioeconomic challenges including educational disruptions, employment instability, and reduced income, alongside diminished HRQoL.
Background
Primary central nervous system tumors are among the most common cancers in AYAs aged 15 to 25 years, with unique biological and therapeutic challenges. While survival rates have improved, long-term socioeconomic and quality of life outcomes remain underexplored, especially for those with benign or slow-growing tumors. Understanding these outcomes is critical to developing targeted support and interventions for this vulnerable population.
Data Highlights
The study included patients diagnosed between 2009 and 2010, surviving at least eight years post-diagnosis, recruited from 37 neurosurgery centers across France. Socioeconomic indicators assessed included educational attainment, grade retention, income level, employment status, job stability, and workplace accommodations. HRQoL was measured using the SF12 quality-of-life score. Clinical data encompassed tumor histology and treatment modalities.
Key Findings
AYAs with PCNST experienced significant educational disruptions, including grade retention and lower educational attainment compared to pre-diagnosis levels.
Employment outcomes were adversely affected, with higher rates of unemployment, unstable job contracts, and frequent job changes reported.
Income levels were generally lower than expected for age-matched peers, reflecting socioeconomic challenges.
Workplace adjustments and knowledge of tools for maintaining or returning to work were limited among survivors.
HRQoL scores indicated persistent reductions in physical and mental health domains even a decade after diagnosis.
Most patients had benign or slowly evolving tumors and did not receive intensive treatments, yet still faced long-term life disruptions.
Clinical Implications
Clinicians should recognize that AYAs surviving low-grade PCNST face enduring socioeconomic and quality of life challenges beyond tumor control. Comprehensive survivorship care should include educational support, vocational rehabilitation, and psychosocial interventions to improve employment stability and HRQoL. Early identification of at-risk patients may facilitate tailored interventions to mitigate long-term adverse outcomes.
Conclusion
A decade after diagnosis, AYAs treated for low-grade PCNST continue to experience significant socioeconomic difficulties and reduced quality of life. These findings underscore the need for integrated long-term support strategies addressing both medical and social dimensions of survivorship.
References
French Brain Tumor DataBase (FBTDB) -- Comprehensive PCNST registry in France
Central Brain Tumor Registry of the United States (CBTRUS) -- Epidemiology of PCNST
INCa -- Tailored oncological care recommendations for AYAs
SF12 Quality of Life Instrument -- HRQoL assessment tool
