Factors affecting quality of life in epidermolysis bullosa

Epidermolysis bullosa is a rare group of inherited disorders that manifests as blistering or erosion of the skin in response to little or no apparent trauma. Patients suffer from long-term physical, social and economic consequences. Despite the fact that quality of life assessment has rapidly become...

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Bibliographic Details
Published inExpert review of pharmacoeconomics & outcomes research Vol. 10; no. 3; pp. 329 - 338
Main Authors Pagliarello, Calogero, Tabolli, Stefano
Format Journal Article
LanguageEnglish
Published England Informa Healthcare 01.06.2010
Taylor & Francis
Expert Reviews Ltd
Subjects
Cancer therapies
Care and treatment
Caregivers - psychology
Chronic illnesses
Dermatology
Diagnosis
disability
Disease
Epidermolysis bullosa
Epidermolysis Bullosa - diagnosis
Epidermolysis Bullosa - physiopathology
Epidermolysis Bullosa - therapy
Health aspects
health outcome
Health Policy
Humans
Life expectancy
Lymphatic system
Patients
Quality of Health Care
Quality of Life
Questionnaires
rare disease
Skin cancer
Social aspects
Italy
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Summary:Epidermolysis bullosa is a rare group of inherited disorders that manifests as blistering or erosion of the skin in response to little or no apparent trauma. Patients suffer from long-term physical, social and economic consequences. Despite the fact that quality of life assessment has rapidly become a significant outcome variable in dermatology research, only a few studies regarding epidermolysis bullosa patients are available. This paper reviews studies evaluating the effect of epidermolysis bullosa on quality of life in patients and caregivers in order to assess which factors can best describe their health-related quality of life. Currently, considerable deficits prevail in both the diagnosis and treatment of rare skin diseases. Moreover, the psychological and social morbidities very easily evade the eyes of clinicians. Comparison of the impact of epidermolysis bullosa with that of other conditions is clearly valuable for making public policy decisions. This review indicates the need for more rigorous exploration of the impact of such diseases to further guide treatment and to monitor quality of care.
ISSN:1473-7167
1744-8379
DOI:10.1586/erp.10.28