The following is a summary of “Patients’ unmet needs and treatment preferences concerning digital ulcers in systemic sclerosis,” published in the March 2024 issue of Rheumatology by Bandini et al.
Researchers conducted a retrospective study to investigate the impact of digital ulcers (DUs) on quality of life and function in systemic sclerosis (SSc) patients and identify their perspectives and unmet needs regarding SSc-DUs.
They invited SSc patients to participate in an online survey through international patient associations and social media platforms.
The results showed that 358 responses were collected from 34 countries, with the majority coming from the US (65.6%), followed by the UK (11.5%) and Canada (4.5%). Recurrent DUs were prevalent, with 46.1% reporting more than 10 DUs, 21.5% reporting 5–10 DUs, 28.5% reporting 1–5 DUs, and 3.9% reporting only 1 DU. Fingertip DUs were the most common (84.9%), followed by those over the interphalangeal joints (50.8%). The impact of DUs on patients was wide-ranging, affecting emotional well-being, daily activities, and personal relationships. Half of the respondents (51.7%) received wound/ulcer care, primarily from non-specialist wound care clinics (63.8%). There was notable variability in local DU care, particularly regarding debridement and pain management. DU-related education was provided to only one-third of patients. About one-quarter (24.6%) expressed satisfaction with the provided DU treatments in relieving symptoms. Pain, limited hand function, and ulcer duration/chronicity were the primary factors influencing patients to consider changing their DU treatments.
Investigators concluded that DU management is highly variable across countries, with limited access to specialists, unmet patient needs, and neglected education, highlighting the urgent need for evidence-based treatment pathways.
Source: academic.oup.com/rheumatology/advance-article-abstract/doi/10.1093/rheumatology/keae130/7617841