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 - Scorecard - MDSpire

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

  • By

  • Mayen, Thomas

  • Morelle, Magali

  • Zouaoui, Sonia

  • Kallel, Mazen

  • Lemée, Jean Michel

  • Saadoun, Audrey

  • Cebula, Hélène

  • Aouaissia, Sandra

  • Al Awadhi, Abdullah

  • Leclerc, Arthur

  • Herbrecht, Anne

  • Boetto, Julien

  • Darlix, Amélie

  • Rigau, Valérie

  • Trétarre, Brigitte

  • Roujeau, Thomas

  • Bauchet, Luc

  • Moumjid, Nora

  • March 5, 2026

  • 0 min

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Clinical Scorecard: Socioeconomic Outcomes and Health-Related Quality of Life in Adolescents and Young Adults with Low-Grade Primary Central Nervous System Tumors a Decade Post-Diagnosis

At a Glance

CategoryDetail
ConditionPrimary central nervous system tumors (PCNST) in adolescents and young adults (AYAs)
Key MechanismsTumors with specific biological, epidemiological, and therapeutic characteristics affecting long-term socioeconomic status and health-related quality of life
Target PopulationAdolescents and young adults aged 15 to 25 years at diagnosis with PCNST
Care SettingNeurosurgery centers across France with multidisciplinary follow-up

Key Highlights

  • PCNST are among the most common cancers in AYAs with significant long-term socioeconomic and quality of life impacts.
  • Long-term challenges include educational disruptions, unstable employment, and reduced career advancement opportunities.
  • Study conducted a national retrospective analysis 10 years post-diagnosis assessing socioeconomic outcomes and HRQoL.

Guideline-Based Recommendations

Diagnosis

  • Histological confirmation of PCNST is required for inclusion and accurate diagnosis.
  • Age at diagnosis should be considered to tailor oncological and socio-educational care.

Management

  • Tailored oncological care and socio-educational support recommended for AYAs aged 15–25 years.
  • Multidisciplinary approach involving neurosurgeons, clinical research associates, and other healthcare professionals.

Monitoring & Follow-up

  • Long-term follow-up including socioeconomic status, educational attainment, employment stability, and HRQoL assessments.
  • Use of structured questionnaires and clinical data extraction for comprehensive monitoring.

Risks

  • Risk of socio-economic difficulties including grade retention, unemployment, and unstable job contracts.
  • Potential diminished health-related quality of life despite benign or slow-growing tumor status.

Patient & Prescribing Data

AYAs diagnosed with PCNST aged 15–25 years, surviving at least 8 years post-diagnosis

Most patients had benign or slowly evolving tumors; treatments included surgery and possibly radiotherapy/chemotherapy, with long-term socio-economic and HRQoL impacts assessed.

Clinical Best Practices

  • Ensure histological confirmation for accurate diagnosis and appropriate treatment planning.
  • Implement tailored socio-educational support programs addressing educational and employment challenges.
  • Conduct long-term multidisciplinary follow-up focusing on socioeconomic outcomes and HRQoL.
  • Engage patients in structured self-reported data collection to monitor life course impacts.
  • Coordinate care across neurosurgery centers with designated personnel for data collection and patient support.

References

Original Source(s)

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