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Background Wound care is the cornerstone of treatment for patients with epidermolysis bullosa (EB); however, there are currently no guidelines to help practitioners care for these patients. Objectives The objective of this study was to generate a list of recommendations that will enable practitioners to better care for patients with EB. Methods An expert panel generated a list of recommendations based on the best evidence available. The recommendations were translated into a survey, and sent to other EB experts to generate consensus using an online-based modified Delphi method. The list was refined and grouped into themes and specific recommendations. Results There were15 respondents (45% response rate), with significant experience in the EB field (>10 years [67%]). Respondents included physicians (67%), nurses (17%), and allied health professionals (7%). There was more than 85% agreement for all the proposed items. These were further refined and grouped into 5 main themes (assessment and management of factors that impair healing, patient-centered concerns, local wound care, development of an individualized care plan, and organizational support) and 17 specific recommendations. Limitations There is a paucity of scientific evidence with most recommendations based on expert opinion. Conclusions These recommendations will provide practitioners with a framework for caring for these patients. Additional scientific research including effectiveness studies for everyday practice and expert consensus, may further refine these recommendations.

After reading this article and taking the test, the reader should be able to: 1. Discuss the wound healing process and wound assessment. 2. Describe the types of dressings available and how they meet the needs of the individual patient.

This cross‐sectional international survey assessed patients’ perceptions of their wound pain. A total of 2018 patients (57% female) from 15 different countries with a mean age of 68·6 years (SD = 15·4) participated. The wounds were categorised into ten different types with a mean wound duration of 19·6 months (SD = 51·8). For 2018 patients, 3361 dressings/compression systems were being used, with antimicrobials being reported most frequently (n= 605). Frequency of wound‐related pain was reported as 32·2%, ‘never’ or ‘rarely’, 31·1%, ‘quite often’ and 36·6%, ‘most’ or ‘all of the time’, with venous and arterial ulcers associated with more frequent pain (P= 0·002). All patients reported that ‘the wound itself’ was the most painful location (n= 1840). When asked if they experienced dressing‐related pain, 286 (14·7%) replied ‘most of the time’ and 334 (17·2%) reported pain ‘all of the time’; venous, mixed and arterial ulcers were associated with more frequent pain at dressing change (P < 0·001). Eight hundred and twelve (40·2%) patients reported that it took <1 hour for the pain to subside after a dressing change, for 449 (22·2%) it took 1–2 hours, for 192 (9·5%) it took 3–5 hours and for 154 (7·6%) patients it took more than 5 hours. Pain intensity was measured using a visual analogue scale (VAS) (0–100) giving a mean score of 44·5 (SD = 30·5, n= 1981). Of the 1141 who reported that they generally took pain relief, 21% indicated that they did not feel it was effective. Patients were asked to rate six symptoms associated with living with a chronic wound; ‘pain’ was given the highest mean score of 3·1 (n= 1898). In terms of different types of daily activities, ‘overdoing things’ was associated with the highest mean score (mean = 2·6, n= 1916). During the stages of the dressing change procedure; ‘touching/handling the wound’ was given the highest mean score of 2·9, followed by cleansing and dressing removal (n= 1944). One thousand four hundred and eighty‐five (80·15%) patients responded that they liked to be actively involved in their dressing changes, 1141 (58·15%) responded that they were concerned about the long‐term side‐effects of medication, 790 (40·3%) of patient indicated that the pain at dressing change was the worst part of living with a wound. This study adds substantially to our knowledge of how patients experience wound pain and gives us the opportunity to explore cultural differences in more detail.