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Quality of life: How it relates to cutaneous disease in ectodermal dysplasias


How quality of life (QoL) relates to the degree of skin involvement in ectodermal dysplasias (ED) was studied in 42 ED patients (14 adults, 28 children). Severity of disease was measured by validated Likert scales. QoL in children was measured by the Dermatology Life Quality Index (DLQI) and Skindex-29, while the RAND Short Form-36 was used in adults. Severity rating of disease symptoms revealed the following rank order: hypohidrosis > alopecia > fingernail involvement in both adults and children. The greatest impact on QoL was attributed to symptoms of ED, most likely due to hypohidrosis, atopic dermatitis, skin erosion and infections. Alopecia did not appear to play a significant role. Enhanced awareness ...

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