Prevalence of Suicide Risk in Neurofibromatosis Type 1 (NF1) Patients
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Background: Neurofibromatosis type 1 (NF1) is a rare autosomal dominant disorder characterized by multiple nerve sheath tumors and a variety of physical manifestations. Emerging evidence suggests that adults with NF1 may experience higher rates of hopelessness and suicidal ideation compared to the general population. This systematic review and meta-analysis aimed to determine the pooled prevalence of suicidal ideation in adults with NF1 and to identify key risk factors. Methods: We adhered to PRISMA guidelines to search MedLine, EMBASE, PsycInfo, and other electronic databases from January 1980 through September 2023 using keywords “neurofibromatosis type 1,” “NF1,” “suicide,” and “suicidal ideation.” After removing duplicates and screening titles/abstracts, 29 articles underwent full-text review; 3 studies (total N=220 NF1 patients; sample sizes 50–60 each) provided sufficient quantitative data for meta-analysis. Quality appraisal employed standardized checklists. A random-effects model was used to estimate the pooled prevalence. Multivariate logistic regression results from individual studies were synthesized narratively. Results: The pooled lifetime prevalence of suicidal ideation among adults with NF1 was 42% (95% CI: 19–65%), significantly exceeding matched control rates of approximately 10%. Key predictors identified across studies included higher pain severity (p<0.01) and greater perceived disability (p<0.01). Comparisons between NF1 and NF2 cohorts indicated consistently higher frequency and intensity of suicidal thoughts in NF1 patients. Conclusions: Suicidal ideation is alarmingly prevalent in adults with NF1. Chronic pain and functional impairment emerge as principal risk factors. We recommend routine suicide risk screening and targeted psychosocial interventions to support this vulnerable population.
