We are excited to announce the publication of a recent paper in the British Journal of Dermatology, introducing a novel patient-reported outcome measure (PROM) for Epidermolysis Bullosa (EB). Authored by Gudrun Salamon (SFU), her research team and international colleagues, this paper presents the Psychometric Properties of the Instrument for Scoring Clinical Outcomes of Research for EB Patient Score (iscorEB-p) and was published with an impact factor of 10.3.

Epidermolysis Bullosa, a rare and debilitating condition characterized by skin fragility, affects approximately 500,000 individuals worldwide. The iscorEB-p fills a crucial gap in EB research by providing a compact tool to assess patients’ internal perceptions and experiences.

Key Findings

For rare diseases, it is much more difficult to obtain statistically relevant participant numbers. Through psychometric testing with data from 95 EB patients from around the world, the study establishes the iscorEB-p as a reliable and valid instrument. Key findings include excellent reliability and internal consistency (α = 0.90), a two-factor solution elucidating ‘everyday life functioning’ and ‘specific EB symptoms’, and strong convergent validity with established measures such as the Satisfaction With Life Scale and the Quality of Life in Epidermolysis Bullosa questionnaire.

Implications and Utility

The study underscores the importance of integrating the patient perspective into diagnostic processes and the utility of the iscorEB-p in clinical practice and research settings. With its ability to capture even subtle changes over time, this instrument promises to enhance quality-of-service monitoring and advance our understanding of EB’s impact on patients’ lives.

The publication of this paper is a step towards emphasising the patient perspective and underscores our commitment to improving the lives of those affected by this challenging condition: https://doi.org/10.1093/bjd/ljae019  

In the video, Gudrun Salamon and Sophie Strobl (Faculty of Psychology, SFU) talk about their research on Epidermolysis Bullosa and the recently published paper:

To learn more, visit the project website: https://psychologie.sfu.ac.at/en/research/epidermolysis-bullosa