Perception of Parents Regarding Oral Health‐Related Quality of Life of Children With Epidermolysis Bullosa: A Cross‐Sectional Study

BACKGROUND: Epidermolysis bullosa (EB) is a rare disorder characterized by recurrent blisters on the skin and oral mucosa, occurring spontaneously or after minor trauma. AIM: Evaluate the oral health status of children with EB and parents' perceptions of its impact on their child's and family's quality of life. DESIGN: A cross-sectional study with age-matched groups was conducted with 42 children (14 with EB and 28 without EB), aged 2-10 years, along with their parents/guardians. Participants were recruited from a reference center and a school clinic. Data demographic and socioeconomic were collected. Oral health-related quality of life (OHRQoL) was measured using the Parental-Caregiver Perceptions Questionnaire (P-CPQ-short form) and Family Impact Scale (FIS). Oral examination included evaluation of gingival condition, malocclusions, dental caries, and oral lesions. Statistical analysis included Chi-square, Mann-Whitney, t-test, and Kruskal-Wallis tests (α = 5%). RESULTS: Children with EB had significantly higher gingival and plaque indices (p = 0.001; p < 0.001). Parents reported worse OHRQoL for children with EB, especially in "oral symptoms" and "functional limitations" (p < 0.001). FIS scores were similar between groups (p > 0.05). Oral lesions were significantly associated with poorer OHRQoL (p = 0.001). CONCLUSIONS: Oral lesions were responsible for impacts experienced in children's daily lives, with significant negative effects occurring through symptoms.