Foot Care in Epidermolysis Bullosa: Evidence-based Guideline

M.T. Khan; M. O'Sullivan; B. Faitli; J.E. Mellerio; R. Fawkes; M. Wood; L.D. Hubbard; A.G. Harris; L. Iacobaccio; T. Vlahovic; L. James; L. Brains; M. Fitzpatrick; K. Mayre-Chilton


The British Journal of Dermatology. 2020;182(3):593-604. 

In This Article

Development of the Guideline and Methodology Used for Formulating the Recommendation

In 2016, an international panel of multidisciplinary health professionals and people living with EB was coordinated through DEBRA International, through voluntary membership. The panel represented people with clinical or personal experience of EB, covering both specific adult and paediatric knowledge bases. All panel members were encouraged to participate actively in all stages of the guideline development, so that the co-construction of knowledge and experience of the condition could be seen to move beyond tokenism in relation to the incorporation of the expert patients who live with EB on a daily basis.

Following the SIGN methodology[36] the panel decided on the clinical question, 'Can podiatry support help improve the quality of life of people living with EB?', and used this to focus their search through considering participants, interventions, comparisons and outcomes (PICOS) (Table S1; see Supporting Information).[36,37] This process was informed by priorities raised by people living with EB from an international survey using DEBRA International, EB-CLINET databases and distribution of hard copies of the survey in clinics in Australia (Appendix S7; see Supporting Information), and a preliminary literature search. The panel voted for the relative importance of the outcomes and selected the top six to seven priorities that matched those raised from the survey.[36,37]