Body-Focused Repetitive Behaviors in NF1 Patients: A National Survey-Based Study

A national cross-sectional survey of 143 respondents from an NF1 registry characterizes the prevalence and quality-of-life impact of body-focused repetitive behaviors (BFRBs). The dataset includes survey responses reporting BFRB types and Dermatology Life Quality Index (DLQI) scores, analyzed via multivariable logistic regression. It was published on figshare by 'figshare admin karger' and last updated on May 18, 2026.

Use Cases

• Analyze the association between BFRB prevalence and dermatology-related quality-of-life impairment based on DLQI scores.
• Model predictors of moderate-severe quality-of-life impairment using multivariable logistic regression based on survey-reported BFRBs.
• Compare the prevalence of specific BFRBs (skin picking, onychophagia, onychotillomania, trichotillomania) within an NF1 cohort.

Strengths

• Dataset includes results from 143 survey respondents, providing a specific sample size.
• Reports precise prevalence percentages for four BFRB types and mean DLQI scores with statistical significance (p<0.001).
• Analysis includes odds ratios (OR 4.88, OR 1.93) for quality-of-life impairment linked to BFRBs.

Limitations

• Column-level documentation is absent; field semantics must be inferred after download.
• Row count is unknown, which may limit suitability assessment.
• Data may reflect self-selection bias inherent to voluntary online surveys.

Provenance

Source

figshare admin karger

Collection Method

Voluntary online survey distributed to NF1 registry members.

Freshness

Last updated 2026-05-18 07:55:09; freshness should be verified.

Geography

National (coverage unspecified)