Subungual Glomus Tumors in Neurofibromatosis Type 1: A National Survey-Based Study

Glomus tumors are benign neoplasms most commonly occurring in the subungual region and distal digits. Prior studies suggest an association between glomus tumors and neurofibromatosis type 1 (NF1) but prevalence and quality-of-life (QoL) impact remain incompletely defined. We conducted a national survey-based study to evaluate prevalence of subungual glomus tumor diagnosis and glomus tumor-related nail symptoms among individuals with NF1 and to assess associated dermatology-related QoL. Following IRB exemption, an online survey was distributed to NF1 patients enrolled in the Children’s Tumor Foundation registry. Participants reported prior glomus tumor diagnosis, nail symptoms/signs, and Dermatology Life Quality Index (DLQI). Among 143 respondents, complete responses were available for 120. Overall, 8.9% reported a prior subungual glomus tumor diagnosis and 43.4% reported ≥1 related symptom. Notably, 40.2% of participants without a prior diagnosis reported symptoms, suggesting under-recognition. Respondents with ≥1 symptom had significantly worse DLQI compared with asymptomatic participants (p=0.009). In adjusted models, symptom presence was associated with moderate to severe QoL impairment (DLQI ≥6; OR 2.28, 95% CI 1.05–4.96). Targeted nail screening during NF1 surveillance may facilitate earlier recognition and reduce avoidable morbidity.