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

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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: Patient-reported outcome networks from 4005 survivors were compared in topology between survivors of primary CNS tumors (n = 164) and non-CNS tumors (n = 3841). Survivors were diagnosed between 1999 and 2015 at ages 18 to 39 years, who completed the EORTC QLQ-SURV100 (Mdn follow-up = 12.31 years). 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-related and treatment-related characteristics were explored. Results: Survivors of central nervous system (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 (ie, 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.
Funding Information
  • Netherlands Organization for Scientific Research VIDI grant (198.007)
  • Netherlands Organization for Scientific Research VIDI grant (#480-08-009)
  • Netherlands Organization for Scientific Research
  • KWF developer grant (2023-3: 15486)

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