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Quality of life in epidermolysis bullosa


: H. M. Horn, Royal Infirmary of Edinburgh, Lauriston Place, Edinburgh, EH3 9YW, UK. Tel.: +44 131 5362456. Fax: +44 131 5363686. E-mail:


Summary The quality of life of people with epidermolysis bullosa (EB) living in Scotland was assessed by postal questionnaire using the Dermatology Life Quality Index (DLQI) and the Children's Dermatology Life Quality Index (CDLQI). There were 143 people with EB simplex (EBS) and 99 individuals with non-Hallopeau--Siemens subtypes of dystrophic EB (DEB). A further six individuals had the severe Hallopeau--Siemens subtype of DEB (RDEB-HS). The overall response was 48% (EBS 52%, DEB 40% and RDEB-HS 83%). Impairment of quality of life (QOL) was greatest in those with RDEB-HS, mean scores (adults, 18; children, 22) exceeding those of any skin disorder previously assessed. The effect on QOL of EBS and other subtypes of DEB was similar to that of moderately severe psoriasis and eczema. EBS had a greater impact on QOL than the non-Hallopeau--Siemens subtypes of DEB (EBS adults mean score, 10.7; EBS children mean score, 15; DEB adults mean score, 7.5; DEB children mean score, 11.5).