New paper on patient-reported outcome measure for EB

Paper on iscoreEB-p published

EB Resnet member DEBRA Austria has funded several projects at the Sigmund Freud University (SFU) Vienna, focusing on the quality of life for people with Epidermolysis Bullosa (EB). In connection with these research initiatives, the team led by DDr. Gudrun Salamon has announced the publication of a recent paper in the British Journal of Dermatology. This paper introduces a novel patient-reported outcome measure (PROM) for EB, known as the Instrument for Scoring Clinical Outcomes of Research for EB Patient Score (iscorEB-p), which was published with an impact factor of 10.3.

Main Results

Research on rare diseases often faces challenges in obtaining statistically relevant participant numbers. However, this study successfully utilized psychometric testing with data from 95 EB patients worldwide, establishing the iscorEB-p as a reliable and valid instrument. Key findings include:

Excellent reliability and internal consistency: α = 0.90
Two-factor solution/ Highlighting 'everyday life functioning' and 'specific EB symptoms'
Strong convergent validity: Correlations with established measures like the Satisfaction With Life Scale and the Quality of Life in Epidermolysis Bullosa questionnaire

Significance

The study highlights the critical importance of integrating patient perspectives into diagnostic processes and demonstrates the utility of the iscorEB-p in in both clinical practice and research environments. Its ability to detect subtle changes over time improves quality-of-service monitoring and deepens our understanding of EB's impact on patients' lives.

The publication of this paper marks a significant advancement in prioritizing the patient perspective and reinforces our commitment to improving the lives of those affected by this challenging condition. Read the full paper.

In the accompanying video, Gudrun Salamon and Sophie Strobl (Faculty of Psychology, SFU) discuss their research on Epidermolysis Bullosa and the recently published paper.