Impact of clinical course of epidermolysis bullosis on quality of life of patients in Ukraine
Journal Title: Український журнал дерматології, венерології, косметології - Year 2019, Vol 0, Issue 2
Abstract
Objective — to determine the impact of the severity of epidermolysis bullosa (EB) on the quality of life (QL) of patients with this disease. Materials and methods. The work was performed at the Department of Dermatology and Venereology with the support of the center «Debra Ukraine». 43 patients of both sexes with a confirmed diagnosis of congenital EB were examined. This represents about 20% of the total registered population of these patients in Ukraine. In the surveyed patients, the history of the clinical course of the disease was collected, a detailed general review was carried out, and the Birmingham Severity Index (BSI) was assessed. To assess the quality of life of patients with EB, the quality of life index was used for patients over the age of 16, and the dermatological quality of life pediatric index — for patients aged 4—16 years. Results and discussion. The use of BSI during the study allowed objective assessment of somatic lesions of skin, nails, larynx and oral cavity of children and adults. Analysis of patients’ responses to specific questions of BSI made it possible to compare and evaluate all clinical manifestations of EB both in children and in adults. The volume of this publication, unfortunately, does not allow a detailed description of the revealed dependence of the effect of certain somatic disorders characteristic of BE on quality of life as a whole and its individual components. Therefore, so far we can conclude that the somatic lesions of the skin and other organs have a significant and distinctly negative effect on the quality of life of these patients. Pain sensations (according to the DN4 questionnaire) based on the patients’ responses are mainly perceived by them as a burning sensation and partly resemble the effects of electric shock, associated with itching and partly with pinching and tingling. Adult and pediatric dermatological indexes-questionnaires allowed us to create an overall picture of the responses of children and adults with BE to questions concerning their self-assessment of the impact of the affected skin on the quality of life as a whole and its individual components. Conclusions. The revealed age differences in the patients’ self-assessment of their objective skin disorders, in our opinion, are mainly caused by the greater emotionality of children on the one hand and the more psychologically balanced assessment by the adults – on the other.
Authors and Affiliations
K. V. Kolyadenko, O. Ye. Fedorenko, K. S. Tkaсhyshyna
Keywords
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- EP ID EP614334
- DOI 10.30978/UJDVK2019-2-25
- Views 98
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