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ORIGINAL RESEARCH article

Front. Neurol.
Sec. Neuro-Oncology and Neurosurgical Oncology
Volume 15 - 2024 | doi: 10.3389/fneur.2024.1432196
This article is part of the Research Topic Integrating Health-Related Quality of Life in Neuro-Oncology View all 8 articles

Quality of life of patients with neurofibromatosis 1physical disability does not necessarily result in inferior poor mental health

Provisionally accepted
Ute M. Baezner Ute M. Baezner *Leonie Stauss Leonie Stauss Thomas Kapapa Thomas Kapapa christian r. wirtz christian r. wirtz Andrej Pala Andrej Pala
  • University of Ulm, Ulm, Germany

The final, formatted version of the article will be published soon.

    compare the different subclasses among patients with neurofibromatosis 1 (NF1).We conducted a prospective analysis of 89 NF1 patients between January 2016 and March 2018. Data sourced from local records including demographic information, employment status, education level, and marital status. All patients completed 36-Item Short Form Health Survey (SF-36) and additionally the numerical pain rating scale (NPS). Patients were stratified based on severity of NF1, visibility and disease severity.Results: Among 89 patients, severity was classified as grade 4 was identified in 42 (47.2%), moderate in 17 (19.1%), mild in 23 (25.8%) and minimal in 7 (7.9%) cases. According to visibility scale, severe grade 3 was found in 28 (31.5%), moderate grade 2 in 26 (29.2%) and mild grade in 35 (39.3%) cases. SF-36 data, except for pain, showed significantly lower values, if compared to the standard German population (p<0.001, physical component summary p=0.045). Sex, marital status and education level did not significantly influence results. Employment was significantly associated with better mental and physical status (p=0.028 and p=0.01 respectively) and age >40 was linked to lower physical (p=0.027) but not mental component scores (p=0.362). The numerical pain rating scale indicated pain levels of 7-10 in 9 cases (10,1%), 5-6 in 10 patients (11.2%), 1-4 in 26 patients (29.2%) and no pain in 44 cases (49.4%). Physical component scores significantly differed across different NPS grades (p<0.001) but not in mental component scores (p=0.06). Finally, no significant differences were found in mental component scores across severity or visibility grades.Severity and visibility grades of patients with NF1 maydo not necessarily result in decreased poor mental components healthand physical limitations in comparison with lower grades. Symptomatic treatment should be considered even for severely disabled patients as they may have comparable QoL to less severely affected patients with NF1. Employment was linked to better quality of life outcomes in our findings.

    Keywords: NF1, Quality of Life, SF-36, severity, visibility

    Received: 13 May 2024; Accepted: 14 Oct 2024.

    Copyright: © 2024 Baezner, Stauss, Kapapa, wirtz and Pala. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

    * Correspondence: Ute M. Baezner, University of Ulm, Ulm, Germany

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