AI Article Synopsis
- Patient-Related Outcome Measures (PROMs) like iscorEB allow patients with epidermolysis bullosa (EB) to share their personal health experiences, which is crucial for understanding this complex disease.
- The iscorEB tool includes both a clinician score and a patient questionnaire, aiming to assess and improve health outcomes for EB patients.
- The iscorEB-p demonstrated excellent reliability and validity in a study with 95 participants, confirming its usefulness in capturing the health status and daily experiences of individuals with EB.
Article Abstract
Background: In contrast to clinical diagnosis via external examination, patient-related outcome measures (PROMs) allow access to patients' internal perceptions. In the case of epidermolysis bullosa (EB) - a rare disease characterized by a wide variety of symptoms and individual disease courses - it is important to integrate the patient's perspective into diagnostic processes. The Instrument for Scoring Clinical Outcomes of Research for EB (iscorEB) is an EB-specific measurement tool, combining a clinician score (iscorEB-c) and a patient questionnaire (iscorEB-p).
Objectives: The aim of this study is to establish the iscorEB-p as an independent PROM tool by exploring its psychometric properties.
Methods: Sample-based psychometric testing and evaluation were performed on data collected via a multinational online cross-sectional study.
Results: Data analysis was performed with n = 95 participants across all EB types. The reliability and internal consistency of the iscorEB-p was excellent (α = 0.90). Principal component analysis with a varimax rotation resulted in a two-factor solution, explaining 55.6% of the total variance, with the distinct factors 'everyday life functioning' and 'specific EB symptoms'. Convergent validity was shown by high correlations to the Satisfaction With Life Scale (r = -0.52, P < 0.001), the Quality of Life in Epidermolysis Bullosa questionnaire (r = 0.72, P < 0.001) and the Epidermolysis Bullosa Family Burden of Disease questionnaire (r = -0.73, P < 0.001).
Conclusions: The iscorEB-p is a reliable and valid instrument to assess patient-reported health status of people with EB.
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| http://dx.doi.org/10.1093/bjd/ljae019 | DOI Listing |
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