Bandini Giulia, Alunno Alessia, Alcacer-Pitarch Begonya, Ruaro Barbara, Galetti Ilaria, El-Aoufy Khadija, Pinheiro Filipe, Campanaro Giulia, Jade Judith, Di Donato Stefano, Muir Lindsay, Moggi Pignone Alberto, Bellando Randone Silvia, Del Galdo Francesco, McMahan Zsuzsanna H, Matucci-Cerinic Marco, Hughes Michael
Department of Experimental and Clinical Medicine, Division of Internal Medicine, University of Florence, Florence, Italy.
University of L'Aquila, Department of Clinical Medicine, Life Health and Environmental Sciences, Internal Medicine and Nephrology Division, ASL1 Avezzano-Sulmona-L'Aquila, L'Aquila, Italy.
Rheumatology (Oxford). 2025 Mar 1;64(3):1277-1283. doi: 10.1093/rheumatology/keae130.
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.
SSc patients were invited through international patient associations and social media to participate in an online survey.
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.
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.
指端溃疡（DUs）对系统性硬化症（SSc）患者的生活质量和功能有显著影响。我们此次调查的目的是探究患者对SSc-DUs的看法及其未满足的需求。
通过国际患者协会和社交媒体邀请SSc患者参与在线调查。
共收到来自34个国家的358份回复，其中美国（65.6%）、英国（11.5%）和加拿大（4.5%）。发现复发性DUs很常见：>10个DUs（46.1%）、5 - 10个DUs（21.5%）、1 - 5个DUs（28.5%）、1个DUs（3.9%）。指尖DUs最为常见（84.9%），其次是掌指关节上方的DUs（50.8%）。DUs对患者的影响相当大，从广泛的情感影响到对日常生活活动以及人际关系的影响。约一半的受访者（51.7%）报告称他们接受了伤口/溃疡护理，大多数由非专科伤口护理诊所提供（63.8%）。局部（伤口）DUs护理存在显著差异，尤其是在清创和疼痛管理的使用方面。仅三分之一的患者接受了与DUs相关的教育。四分之一的患者（24.6%）对所提供的DUs治疗缓解其DUs症状“非常满意”或“满意”。疼痛、手部功能受限以及溃疡持续时间/慢性程度是患者考虑更换DUs治疗的主要原因。
我们的数据表明各国之间DUs治疗存在很大差异。患者获得专科伤口护理服务的机会有限，只有一小部分患者的DUs需求得到满足。此外，患者教育往往被忽视。迫切需要基于证据的DUs管理治疗途径。
