Patients’ unmet needs and treatment preferences concerning digital ulcers in systemic sclerosis

Abstract

Abstract Objective Digital ulcers (DUs) significantly impact on quality of life and function in patients with systemic sclerosis (SSc). The aim of our survey was to explore patients’ perspectives and their unmet needs concerning SSc-DUs. Methods SSc patients were invited through international patient associations and social media to participate in an online survey. Results A total of 358 responses were obtained from 34 countries: US (65.6%), UK (11.5%) and Canada (4.5%). Recurrent DUs were found to be common: >10 DUs (46.1%), 5–10 DUs (21.5%), 1–5 DUs (28.5%), 1 DU (3.9%). Fingertip DUs were most frequent (84.9%), followed by those overlying the IP joints (50.8%). The impact of DUs on patients is considerable, from broad-ranging emotional impacts to impact on activities of daily living, and on personal relationships. Around half of the respondents (51.7%) reported that they received wound/ulcer care, most often provided by non-specialist wound care clinics (63.8%). There was significant variation in local (wound) DU care, in particular regarding the use of debridement and pain management. DU-related education was only provided to one-third of patients. One-quarter of the patients (24.6%) were ‘very satisfied’ or ‘satisfied’ that the provided DU treatment(s) relieved their DU symptoms. Pain, limited hand function, and ulcer duration/chronicity were the main reasons for patients to consider changing DU treatment. Conclusion Our data show that there is a large variation in DU treatment between countries. Patient access to specialist wound-care services is limited, and only a small proportion of patients had their DU needs met. Moreover, patient education is often neglected. Evidence-based treatment pathways are urgently needed for DU management.