Psychosocial impact of epidermolysis bullosa on patients: A qualitative study

Background Epidermolysis bullosa (EB) is an inherited disorder that results in painful skin blisters requiring daily wound care. The psychosocial impact of EB is one of the most significant concerns for patients, but there is minimal research addressing these concerns or ways to improve patient quality of life (QoL). Objective To examine the psychosocial impact of EB on affected patients and ways to improve their QoL. Methods Eight EB participants were selected from the 2006 DEBRA Family Conference Day in Toronto. Participants were interviewed by a social worker and a field evaluator. The transcript of each interview was assessed using qualitative content analysis. Results Four themes were identified: school interaction, daily life, family interactions, and societal interactions. Participants reported being teased and avoided by peers, and they felt their conditions were misunderstood by the general public. School absenteeism resulted in some patients falling behind in school, which may have been misinterpreted as intellectual impairment. Patients acknowledged significant dependence on others and felt they were contributing to caregiver burden. Conclusions Our findings highlight the psychosocial impact of EB on patients. As EB awareness and resources to support patients and caregivers have improved since this study was conducted, more studies exploring the current landscape and opportunities to improve quality of life are needed.