Perception of Oral Health–Related Quality of Life in Children with Epidermolysis Bullosa: A Quantitative and Qualitative Study

Abstract

Epidermolysis bullosa (EB) is a group of rare skin diseases that can strongly affect the oral mucosa. The aim of the study was to describe the perception of oral health– related quality of life (OHRQoL) in children living with EB. A quantitative and qualitive study was conducted. First, a quantitative analysis was used to compare the Child Oral Health Impact Profile (COHIP) scores of 23 patients living with EB to normative values. Second, a qualitative approach was taken to help understand the oral health experience of 10 children (aged 5–17 y) living with EB until thematic saturation was reached. For every COHIP domain, the scores were significantly lower in patients living with EB than in healthy patients (P = 0.001). The thematic analysis provided several themes: young patients suffer from EB oral complications, with which they deal in different ways; they experience functional disorders, mainly in eating and speaking; and they also require esthetic dental care. The results of this mixed-method study show that, from the perspective of affected children, that EB affects OHRQoL. Using the children’s own words makes it possible to understand both the difficulties they face and their ability to adapt to these difficulties. Their words also show us what they want from the treatment and help us to identify means of improving practices. Knowledge Transfer Statement: The results of this study confirm the difficulties experienced by patients in the oral sphere. They also show that patients are able to adapt and that their demands go beyond functional rehabilitation. This work should encourage dental practitioners to be part of the overall management of the disease, involving regular checkups, preventive dental measures, and oral hygiene education. Therefore, more effective communication is required, not only between the dental and dermatological teams but also with the parents and caregivers.