Vestibular Schwannoma Management: Patient Perspectives and Health Literacy

Objective: To assess medical decision-making, reasons for attrition, and health literacy among vestibular schwannoma (VS) patients last seen in clinic more than 2 years ago. Study Design: Survey. Setting: Tertiary skull base center. Patients: Adults with sporadic VS last evaluated more than 2 years ago. Methods: Survey including Brief Health Literacy Screen (BHLS), a validated 3-question measure of health literacy, and open-ended questions on care; retrospective chart review. Main Outcome Measures: BHLS score, patient reasons for attrition. Results: Of 1011 patients contacted, 205 (20.3%) patients responded and met all criteria for analysis. At initial evaluation, mean patient age was 50.6 ± 12.8 years, roughly half (51.4%) were female, and the majority (80.2%) identified as White. At the time of the survey, 48 (23%) continued to observe their tumor. The remaining 160 (76.9%) patients previously underwent treatment (surgery and/or radiation). Of those treated, 34 (21.3%) underwent intervention elsewhere. Symptoms since the last patient visit did not differ between observed and treated patients. About 94.7% of the cohort displayed high health literacy (BHLS > 9), though rates of inadequate health literacy were higher among observed patients (12.5% versus 3.1% in those treated). The most common reasons for opting not to follow-up included counseling issues, personal decisions, and social/life stressors (including the COVID-19 pandemic). Conclusions: Despite being a highly health-literate cohort, patients cited multiple reasons for attrition. Regardless of whether they were observed or treated, patients described follow-up visits as burdensome and perceived them to be of minimal benefit.