Abstract

Introduction Vestibular schwannomas (VSs) are benign tumors of the vestibulocochlear nerve that often cause significant neurological and functional impairment, affecting patients’ overall quality of life (QoL). While clinical assessments have traditionally focused on hearing preservation and tumor control, patients often emphasize other critical symptoms such as dizziness, pain, cognitive difficulties and satisfaction with care. Therefore, patient-centered care that addresses the full range of patient experiences is essential. Despite its importance, patientcentered care in VS remains underexplored. This study will address this gap by psychometrically validating the German version of the Vestibular Schwannoma Quality of Life (VSQOL) Index, a newly developed QoL tool that includes key patient-centered domains. The primary objective is to validate the reliability and validity of the German VSQOL Index. The secondary aim is to assess VS patients’ experience of patient-centered care and its impact on their well-being.

Methods and analysis This multicenter, cross-sectional study will involve German-speaking VS patients from several clinical centers in Germany and Switzerland as well as an online cohort. Psychometric testing of the German VSQOL will include reliability assessments (e.g. Cronbach’s alpha, test-retest reliability), confirmatory factor analysis and convergent validity. In parallel, the study will assess patient-centered experiences of care using the EPAT questionnaire.

Discussion Ethical approval has been obtained and all participants will be asked to provide written informed consent. The results will be shared through scientific publications and conferences, as well as with patient groups, in order to support improvements in clinical care. By validating the German version of the VSQOL Index, this study will provide clinicians with a reliable tool for capturing patient-reported outcomes in VS, including symptoms that are often overlooked in standard assessments. Using the EPAT questionnaire alongside the VSQOL Index will provide insight into the relationship between patient experiences of care and quality of life. Together, these findings will support the delivery of more patient-centred and needs-oriented care in clinical practice and future research.

Competing Interest Statement

The authors have declared no competing interest.

Funding Statement

This study did not receive any funding.

Author Declarations

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

Yes

The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

Ethical approval has been obtained from all sites involved, including University Medical Center Hamburg- Eppendorf, University Hospital Halle/Saale, University Hospital Heidelberg and University Hospital Zurich.

I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.

Yes

I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).

Yes

I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable.

Yes

Abbreviation Full TermVSVestibular SchwannomaQoLQuality of LifeHrQoLHealth-related Quality of LifePANQOLPenn Acoustic Neuroma Quality of Life QuestionnaireVSQOLVestibular Schwannoma Quality of Life IndexVANVereinigung Akustikus Neurinom e.V.NFTI-QOLNeurofibromatosis 2 Impact on Quality of LifeCOSMINConsensus-based Standards for the Selection of Health Measurement InstrumentsUKEUniversity Medical Center Hamburg-EppendorfEPATExperienced Patient-Centeredness QuestionnaireFDIFacial Disability IndexHL-QOLHearing Loss – Quality of Life QuestionnaireDHI-GDizziness Handicap Inventory – German versionHHIHeadache Handicap InventoryPHQ-4Patient Health Questionnaire-4SF-12Short Form-12SPSSStatistical Package for the Social SciencesGDPRGeneral Data Protection RegulationMIROMedical Informatics and Research OrganisationHIROHeidelberg Institute for Research OrganisationMCARMissing Completely At RandomFIMLFull Information Maximum LikelihoodICCIntraclass Correlation CoefficientCFAConfirmatory Factor Analysis