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Reliability and validity of the instrument for scoring clinical outcomes of research for epidermolysis bullosa (iscorEB)
Author(s) -
Bruckner A.L.,
Fairclough D.L.,
Feinstein J.A.,
LaraCorrales I.,
Lucky A.W.,
Tolar J.,
Pope E.
Publication year - 2018
Publication title -
british journal of dermatology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 2.304
H-Index - 179
eISSN - 1365-2133
pISSN - 0007-0963
DOI - 10.1111/bjd.16627
Subject(s) - epidermolysis bullosa , medicine , context (archaeology) , disease , dermatology , perspective (graphical) , severity of illness , pathology , paleontology , artificial intelligence , computer science , biology
Summary Epidermolysis bullosa (EB) is a group of rare genetic blistering disorders that affects the skin and occasionally internal organs. Accurate estimates of disease severity of such complex disease in the context of research is difficult. We developed a tool called i nstrument for s coring c linical o utcomes of r esearch for E pidermolysis B ullosa (iscorEB) with the goal to assess the disease severity from both physician's and patient's perspective. In the current paper, we report the data from testing the iscorEB in 2 institutions from Canada and the USA. Thirty‐one patients and six physicians from various medical specialties took part in a study to demonstrate how consistent and good the score was at assessing the disease severity. We found that there was good agreement between physicians and between physicians and patients. We also demonstrated that iscorEB is able to differentiate between patients with mild, moderate and severe disease and between subtypes of EB.