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Context <p>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).</p> Objective <p>This study aims to evaluate the long-term socio-economic outcomes and HRQoL of AYAs more than ten years after diagnosis.</p> Methods <p>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.</p> Results <p>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.</p> Discussion <p>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.</p> Clinical trial number <p>Not applicable.</p>

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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

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2026年3月5日

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  • Thomas Mayen,
  • Magali Morelle,
  • Sonia Zouaoui,
  • Mazen Kallel,
  • Jean Michel Lemée,
  • Audrey Saadoun,
  • Hélène Cebula,
  • Sandra Aouaissia,
  • Abdullah Al Awadhi,
  • Arthur Leclerc,
  • Anne Herbrecht,
  • Julien Boetto,
  • Amélie Darlix,
  • Valérie Rigau,
  • Brigitte Trétarre,
  • Thomas Roujeau,
  • Luc Bauchet,
  • Nora Moumjid

摘要

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.