A cross sectional, observational survey to assess levels and predictors of psychological wellbeing in adults with epidermolysis bullosa
Epidermolysis bullosa (EB) describes a clus ter of genetically determined skin disorders. Symptoms can be painful, disabling and disfig uring, yet there is little research on the psycho logical impact of the disease. The study aim was to measure psychological wellbeing in adults with EB; and to examine the association between psychological wellbeing and self effica cy, health locus of control and adjustment to appearance in an observational, cross sectional survey. Questionnaire packs comprising the General Health Questionnaire (GHQ-12), the General Self Efficacy Scale (GSE), the Multidimensional Health Locus of Control Scale (MHLOC), and the Derriford Appearance Scale (DAS-24), were sent to approximately 385 adults with EB. The data were analysed using SPSS. Eighty-seven participants responded. Scores on the GHQ-12 showed non-problematic psychological health in 36% of the sample; lev els bordering on clinical disorder in 32.1% and severe psychological distress in 31.9%. No cor relations were found between demographic fac tors (age and sex) or clinical factors (EB type and perceived severity) and psychological well being. Scores on the GSE, the internal locus of control sub-scale of the MHLOC and the DAS-24 showed them to be statistically significant cor relates of psychological wellbeing (P<0.001; P<0.018; and P<0.001 respectively). In a regres sion analysis, adjustment to appearance and self efficacy accounted for 24% of the variation in psychological wellbeing. Adults with EB might be at risk of experiencing poor psycholog ical health. Interventions designed to enhance disease self management, self efficacy and improve body image are likely to be beneficial in this clinical group.
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