Evidence map›Paper›PMID 42313268›Full record

ArticleFamilial cancer2026

Determinants of the quality of life of patients with NF2-related schwannomatosis and validation of the Dutch NFTI-QOL questionnaire.

Annemijn L Tops, Dorine Goemans, Emmelien Aten, Josefine E Schopman, Radboud W Koot, Hans Gelderblom, Jeroen C Jansen, Erik F Hensen

Abstract readValidation Study
PubMed Full text at PMC Publisher
In one paragraph

Article in Familial cancer, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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0citing papers in PubMed
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1 · What the graph read from it

What it found

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2 · The registry

The trial behind it

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3 · Its place in the literature

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4 · The record

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5 · Who and what money

Authors and funding

8 authors.

Annemijn L TopsDepartment of Otorhinolaryngology - Head and Neck Surgery, Leiden University Medical Center, 2333 ZA, Leiden, The Netherlands. a.l.tops@lumc.nl.
Dorine GoemansDepartment of Otorhinolaryngology - Head and Neck Surgery, Leiden University Medical Center, 2333 ZA, Leiden, The Netherlands.
Emmelien AtenDepartment of Clinical Genetics, Leiden University Medical Center, 2333 ZA, Leiden, The Netherlands.
Josefine E SchopmanDepartment of Medical Oncology, Leiden University Medical Center, 2333 ZA, Leiden, The Netherlands.
Radboud W KootDepartment of Neurosurgery, Leiden University Medical Center, 2333 ZA, Leiden, The Netherlands.
Hans GelderblomDepartment of Medical Oncology, Leiden University Medical Center, 2333 ZA, Leiden, The Netherlands.
Jeroen C JansenDepartment of Otorhinolaryngology - Head and Neck Surgery, Leiden University Medical Center, 2333 ZA, Leiden, The Netherlands.
Erik F HensenDepartment of Otorhinolaryngology - Head and Neck Surgery, Leiden University Medical Center, 2333 ZA, Leiden, The Netherlands.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

NF2-Related Schwannomatosis (NF2-SWN) is a rare tumor predisposition syndrome characterized by heterogeneous clinical manifestations that substantially impact quality of life (QOL). In this diverse patient population, a disease-specific QOL instrument is essential for both research and clinical decision-making. Insight into factors associated with QOL may further facilitate the tailoring of management strategies to individual patient needs. This study aimed to validate the Dutch version of the NF2 Impact on Quality of Life questionnaire (NFTI-QOL) and to identify factors associated with QOL in Dutch patients with NF2. Following forward‑ and backward‑translation, the NFTI-QOL was administered to NF2-SWN patients alongside the SF‑36, EQ‑5D and PANQOL. The NFTI-QOL was repeated after one week. Demographic and clinical data were extracted from medical records. To provide clinical context, questionnaires were also administered to patients with sporadic vestibular schwannoma (sVS). 64 NF2-SWN and 51 sVS patients completed the questionnaires. The NFTI-QOL demonstrated good validity and reliability. In multivariate linear regression, dizziness (β = 2.533, p = 0.027) and facial weakness (β = 4.064, p = 0.008) were significantly associated with QOL, whereas hearing complaints were not. Surprisingly, overall QOL did not differ between NF2-SWN and sVS patients, whereas patients with sVS even reported poorer hearing-related QOL. The Dutch NFTI-QOL is a reliable instrument for assessing QOL in NF2-SWN patients. Dizziness and facial weakness were associated with lower QOL, while hearing problems were not.

Indexed as

NeurilemmomaNeurofibromatosesNeurofibromatosis 2Quality of LifeSkin NeoplasmsAdolescentAdultAgedFemaleHumansMaleMiddle AgedNetherlandsReproducibility of ResultsSurveys and QuestionnairesYoung AdultNeurofibromatosisNF2-related schwannomatosisPatient-reported outcome measure (PROM)Quality of lifeVestibular schwannoma

Identifiers

PMID42313268
PMCPMC13279275

What Socratic holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.