2025 Proffered Presentations
S272: PSYCHOSOCIAL OUTCOMES IN PATIENTS WITH NEUROFIBROMATOSIS TYPE 2: A RETROSPECTIVE DATABASE ANALYSIS
Samira Takkoush, MD1; Heather J Smith, BM1; Jason L Steele, BS2; Mana Espahbodi, MD1; Neil S Patel, MD1; Richard K Gurgel, MD, MSCI1; 1University of Utah; 2Rocky Vista University
Introduction: Neurofibromatosis type 2 (NF2) is a genetic condition marked by bilateral vestibular schwannomas (VS) and multiple CNS schwannomas. NF2 often results in debilitating symptoms such as bilateral hearing loss, disequilibrium, facial paralysis, and chronic pain, which interfere with social and psychological functioning. This study examines risks of psychosocial challenges in adults with NF2 compared to adults with sporadic, unilateral VS using epidemiologic data.
Methods: A retrospective cohort study was conducted using the TriNetX Research Network, which houses records of over 130 million subjects across 93 healthcare organizations with 95% of data included from 2006-2023. Using ICD-10 codes, we identified age- and sex-matched cohorts of adults with NF2 and adults with sporadic VS. Outcomes of interest, occurring at least one day after NF2 diagnosis and excluding patients with the outcome prior to the index, included health hazards related to socioeconomic and psychosocial circumstances (such as unemployment, homelessness, food insecurity) and psychiatric conditions (such as depression and substance use). Absolute and relative risks were calculated within TriNetX before and after matching.
Results: 3,584 adults (mean age 41 ± 19 years, 54% female) with NF2 and 30,880 adults (mean age 59 ± 14 years, 52% female) with sporadic VS were identified through the TriNetX database. An age- and sex-matched cohort of 3,281 (mean age 44 ± 18 years, 54% female) was subsequently created. Compared to controls with sporadic VS, NF2 subjects were more likely to experience health hazards related to socioeconomic and psychosocial circumstances (RR 1.61, 95% CI 1.20-2.18), general problems related to housing and economic circumstances (RR 3.19 95% CI 1.62-6.27), mood disorders (RR 1.27 95% CI 1.11-1.46), major depressive disorder or depressive episodes (RR 1.33, 95% CI 1.19-1.48), mental and behavioral disorders due to psychoactive substance use (RR 1.25, 95% CI 1.04-1.49), opioid related disorders (RR 3.91, 95% CI 2.30-6.65), and cannabis related disorders (RR 1.83, 95% CI 1.22-2.76). Prior to matching, significant differences were noted in homelessness (RR 2.30 95% CI 1.22-4.34), food insecurity (RR 2.87 95% CI 1.41-5.87), social isolation (RR 3.47 95% CI 1.66-7.17), educational difficulties (RR 3.10 95% CI 1.68-5.70), and employment difficulties (RR 1.84 95% CI 1.01-3.34). The matched sample sizes for these outcomes, however, were too small to allow for adequate comparison.
Conclusion: Patients with NF2 were more likely to experience negative socioeconomic and psychological outcomes compared to patients with sporadic VS. These findings suggest an area for improvement in NF2 patient care.