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A cross sectional, observational survey to assess levels and predictors of psychological wellbeing in adults with epidermolysis bullosa

Author(s): Emma Dures | Nichola Rumsey | Marianne Morris | Kate Gleeson

Journal: Health Psychology Research
ISSN 2281-2075

Volume: 1;
Issue: 1;
Start page: e4;
Date: 2013;
Original page

Keywords: psychological wellbeing | skin condition | disfigurement | self-efficacy | body image

Epidermolysis bullosa (EB) describes a cluster of genetically determined skin disorders. Symptoms can be painful, disabling and disfiguring, yet there is little research on the psychological 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 efficacy, 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; levels bordering on clinical disorder in 32.1% and severe psychological distress in 31.9%. No correlations were found between demographic factors (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 correlates of psychological wellbeing (P

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