Factors affecting quality of life in epidermolysis bullosa

Calogero Pagliarello, Stefano Tabolli

Research output: Contribution to journalArticlepeer-review

Abstract

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.

Original languageEnglish
Pages (from-to)329-338
Number of pages10
JournalExpert Review of Pharmacoeconomics and Outcomes Research
Volume10
Issue number3
DOIs
Publication statusPublished - 2010

Keywords

  • disability
  • epidermolysis bullosa
  • health outcome
  • quality of life
  • rare disease

ASJC Scopus subject areas

  • Pharmacology (medical)
  • Health Policy
  • Medicine(all)

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