Symptom burden in young adult brain tumor survivors: Key intervention targets based on patient-reported outcome network analyses

  • Charlotte Sleurs*
  • , Floortje Mols
  • , Laurien De Roeck
  • , Rhodé M. Bijlsma
  • , Suzanne E.J. Kaal
  • , Jacqueline M. Tromp
  • , Monique E.M.M. Bos
  • , Tom van der Hulle
  • , Ann Hoeben
  • , Mathilde C. M. Kouwenhoven
  • , Winette T.A. van der Graaf
  • , Olga Husson
  • , Janine Nuver
  • *Corresponding author for this work

Research output: Contribution to journalArticleScientificpeer-review

Abstract

Background
A brain tumor can lead to functional impairment, which is particularly concerning for adolescents and young adults (AYA). Patient-reported outcomes (PROs) have typically been examined as isolated domains, rather than as covarying symptoms. This study modeled PRO networks, symptom clustering and topology among AYA oncology survivors.

Methods
PRO networks from 4,005 survivors were compared in topology between survivors of primary CNS tumors (n = 164) and non-CNS tumors (n = 3,841). Survivors were diagnosed between 1999 and 2015 at ages 18–39 years, who completed the EORTC QLQ-SURV100 (MDn follow-up = 12.31years). Group-specific networks were estimated based on 33 health-related quality of life (HRQoL) scale scores using graphical LASSO. Wilcoxon rank-sum tests and the Network Comparison Test assessed group differences in the original PRO scales and their network centrality, respectively. Within the CNS subgroup (n = 164), associations with tumor- and treatment-related characteristics were explored.

Results
Survivors of CNS tumors reported higher symptom burden on most PRO scales, along with a more diffuse network showing weaker within-domain cohesion (lower nodal strength and expected influence) and limited cross-domain integration (lower bridge strength). A small subset of nodes showed higher bridge expected influence (i.e., fatigue, physical functioning, sexual problems when sexually active, work), which may represent key targets for intervention. Across both groups, negative health outlook, health distress, and physical functioning emerged as consistent core targets.

Conclusion
Core symptoms may warrant prioritization in clinical follow-up and treatment of cancer survivors. These findings contribute to further development and optimization of tailored neurorehabilitation programs in neuro-oncological care.
Original languageEnglish
Article numbernpag015
Number of pages32
JournalNeuro-Oncology Practice
DOIs
Publication statusAccepted/In press - 2026

Keywords

  • Symptom Network Modeling
  • Patient-Reported Outcomes
  • Treatment-Related Late Effects
  • Rehabilitation Targets

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