Clinical Sciences/Health Conditions
Courtney Frengopoulos, MD
Resident, Physical Medicine and Rehabilitation
McMaster University
Hamilton, Ontario, Canada
Fatima Khaliq, n/a
Medical Student
University of Western Ontario
London, Ontario, Canada
Lee-Ran Goodman, n/a
Medical Student
University of Limerick, Limerick, Ireland
Thornhill, Ontario, Canada
Michael WC Payne, MD
Associate Professor; Medical Director, Amputee Rehabilitation Program; Associate Research Director
Schulich School of Medicine and Dentistry, University of Western Ontario
London, Ontario, Canada
Epidermolysis Bullosa (EB) is a rare genetic condition characterized by fragile skin, in which minor trauma or pressure can cause blisters, chronic wounds and in severe cases, amputation. Balancing prosthetic fit and function with skin integrity is crucial to prevent complications and maximize comfort. However, evidence to guide clinicians when prescribing these devices or troubleshooting difficulties is limited. The objective was to summarize the evidence on prosthetic fitting following amputation for individuals with EB, and to identify barriers and factors associated with successful fitting in this population. The search identified 46 articles; six were included in the scoping review. Eight individuals with nine amputated limbs underwent prosthetic fitting. Interface methods were inconsistently reported; when described, there was variable success with soft silicone or urethane liners. The main barriers identified were recurrent disease and difficulty tolerating conventional suspension systems. Individuals also struggled with the use of other interventions including use of nylon sheaths, stump shrinkers, or elastic bandages for compression. Factors contributing to successful fitting included use of non-adherent dressings, lightweight prostheses and customized suspension systems with adjustable attachments. Several participants achieved independent ambulation or self-care, while others were limited by pain, skin fragility, or disease recurrence. Wear tolerance ranged from a few hours to full workdays in selected cases. This review highlights the importance of an individualized approach to prosthetic fitting for patients with EB and emphasizes the need for adaptations to protect skin integrity while maintaining function. However, further research is needed in order to make robust recommendations for clinical practice.
Design: For this scoping review, the databases PUBMED, EMBASE, Scopus, Web of Science and CINAHL were searched from inception through June 21, 2025. Articles were included if they investigated individuals with EB who underwent an amputation, described the prosthetic fitting process, and reported challenges and/or successes.
Results:
Conclusion:
