Foot care in epidermolysis bullosa: evidence‐based guideline

Abstract

Summary This guideline was designed to provide service providers and users with an evidence‐based set of current best practice guidelines for people and their families and carers, living with epidermolysis bullosa (EB). A systematic literature review relating to the podiatric care of patients with EB was undertaken. Search terms were used, for which the most recent articles relating to podiatric treatment were identified from as early as 1979 to the present day, across seven electronic search engines: MEDLINE, Wiley Online Library, Google Scholar, Athens, ResearchGate, Net and PubFacts.com. The Scottish Intercollegiate Guidelines Network (SIGN) methodology was used. The first guideline draft was analysed and discussed by clinical experts, methodologists and patients and their representatives at four panel meetings. The resulting document went through an external review process by a panel of experts, other healthcare professionals, patient representatives and lay reviewers. The final document will be piloted in three different centres in the U.K. and Australia. Following an EB community international survey the outcomes indicated six main areas that the community indicated as a priority to foot management. These include blistering and wound management, exploring the most suitable footwear and hosiery for EB, management of dystrophic nails, hyperkeratosis (callus), maintaining mobility and fusion of toes (pseudosyndactyly). The evidence here is limited but several interventions currently practised by podiatrists show positive outcomes.

Plantar involvement correlates with obesity, pain and impaired mobility in epidermolysis bullosa simplex: a retrospective cohort study

“…By treating PK, reducing pain, and avoiding overweight through regular and interdisciplinary consultations, the quality of life of people with EBS can potentially be increased. Although early targeting of plantar blistering and PK might represent a potential therapeutic strategy, 21 effective therapy options remain to be elucidated. Furthermore, despite likely underdiagnosis of patients affected by EBS, the challenges faced in everyday life should not remain underestimated.…”

“…Overall, diffuse PK was most frequently associated with complications, such as infections, obesity, and pain and occurred either primarily or evolved from focal PK on pressure points, suggesting that foot shape, physical exercise and body weight also influence PK patterns. Treating PK should be a focus in EBS care and should include regular check‐ups by podiatrists 21 …”

Clinical practice guidelines: Oral health care for children and adults living with epidermolysis bullosa

“…DEBRA International has supported and funded the development of CPG in skin and wound care, 23,24 pain management, 25 psychosocial care, 26 foot care, 27 as well as the guidelines that have already been cited in this article 8,12,17,18 . Research is also supported to explore gene, protein, and cell therapies.…”

Meeting Report: The First Global Congress on Epidermolysis Bullosa, EB2020 London: Toward Treatment and Cure

“…Other complications, such as anemia, oral and dental problems, esophageal strictures, nutritional compromise, airway involvement, contractures, and eye involvement, provide a significant burden for patients with EB, but a good quality, robust evidence base for treatments and interventions is generally lacking. The development of clinical best practice guidelines over recent years, supported by DEBRA International, has tackled some of these knowledge gaps by assembling professionals, patients, and caregivers to develop expert consensus to give practical guidance in areas including oral health, pain, cancer, wound care, foot health, psychosocial care, and occupational therapy, for example (Chan et al, 2019;Khan et al, 2020;Martin et al, 2019).…”