Patient experiences of digital ulcer development and evolution in systemic sclerosis

Hughes, Michael; Pauling, John D; Jones, Jennifer; Denton, Christopher P.; Domsic, Robyn T.; Frech, Tracy; Herrick, Ariane L.; Khanna, Dinesh; Matucci‐Cerinic, Marco; McKenzie, Lorraine; Saketkoo, Lesley Ann; Gooberman-Hill, Rachael; Moore, Andrew

doi:10.1093/rheumatology/keaa037

Cited by 14 publications

(3 citation statements)

References 7 publications

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“…This is especially pertinent for those with SSc-DUs as participants talked about pain from 'healed' ulcers as well as active ulcers. 52 Describing their extreme pain using graphic language seemed to come quite easily to the participants in the FG setting. However, hearing these pain narratives in a clinical environment may be challenging for some healthcare professionals 'who need the understanding, the will and the humanity to hear beyond the words and see behind the picture'.…”

Section: Discussionmentioning

confidence: 99%

What narrative devices do people with systemic sclerosis use to describe the experience of pain from digital ulcers: a multicentre focus group study at UK scleroderma centres

et al. 2020

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ObjectivesDigital ulcers (DUs) are a common complication in systemic sclerosis (SSc). No existing studies have specifically reported on the qualitative patient experience of DU pain, and our current patient-reported outcome measure (PROM) does not capture the multifaceted painful experience of SSc-DU. Our aim was to examine the patient experience of SSc-DU pain.DesignFocus groups with people diagnosed with SSc who had experienced DUs were conducted using a topic guide developed by people with SSc, experts in SSc and experienced qualitative researchers. Focus groups were continued until data saturation had been reached. The focus groups were audio recorded, transcribed verbatim, anonymised and analysed using inductive thematic analysis. Our current study is an integration of the data from these focus groups to specifically examine the patient experience of DU pain.SettingThree specialist scleroderma units across the UK (Bath, Manchester and London).ParticipantsFour focus groups were undertaken; 29 adults (20 women, 9 men) with SSc and a spectrum of historical DUs participated. We included participants with a diverse demographic (including ethnic) background and disease-related characteristics.ResultsFive narrative devices were identified, which encompass how people describe the pain from SSc-DUs: ‘Words to express DU-associated pain’, ‘Descriptions of physical and psychological reactions to pain’, ‘Comparisons with other painful events’, ‘Descriptions of factors that exacerbate pain’ and ‘Descriptions of strategies for coping with the pain’.ConclusionThe experience of SSc-DU pain leads to the use of graphic language and rich description by participants in the focus group setting. Existing SSc-DU outcomes do not adequately capture the patient experiences of SSc-DU pain. Our findings further highlight the multifaceted nature of SSc-DUs and will hopefully support the development of a novel PROM to assess the severity and impact of SSc-DUs.

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Section: Discussionmentioning

confidence: 99%

What narrative devices do people with systemic sclerosis use to describe the experience of pain from digital ulcers: a multicentre focus group study at UK scleroderma centres

et al. 2020

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“…Patients often report residual symptoms at sites of previous DUs, including dysesthesia and paresthesia, which could indicate persistent nerve damage . Some patients report that they can recognize when the emergence of a DU is imminent, describing pain like internal pressure, and physical skin signs (eg, white patches) that break down and ulcerate …”

Section: Clinical Spectrum and Outcome Of Dusmentioning

confidence: 99%

“…It has been postulated that other types of ulcers in patients with SSc could share a potentially treatable ischemic pathogenesis that could be responsive to vascular therapy . Sites of previous DUs, such as digital pitting scars, may represent ischemic foci particularly susceptible to future DUs …”

Section: Du Pathogenesismentioning

confidence: 99%

A Practical Approach to the Management of Digital Ulcers in Patients With Systemic Sclerosis

et al. 2021

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IMPORTANCE Digital ulcers (DUs) occurring on the fingers in patients with systemic sclerosis (SSc) are associated with substantial pain and disability and are often challenging to treat. However, careful clinical assessment and prompt intervention (wound bed management and systemic pharmacologic treatment) may modify the clinical course.OBJECTIVES To provide a practical approach to the assessment and management of SSc-DUs and highlight unmet needs and research priorities.EVIDENCE REVIEW A narrative review of the extant literature was undertaken to provide a broad overview of current knowledge and augmented by expert opinion.FINDINGS Half of the patients with SSc have a history of DUs, and there is a point of prevalence of approximately 10%. Digital ulcers are often very painful and affect all aspects of physical, social, and family life as well as occupation. Digital ulcers are associated with a severe disease course. Systemic sclerosis DUs, particularly those occurring on the fingertips, represent a vascular ischemic complication, although other etiopathogenic factors play an important role. To guide management, a structured clinical approach is required, including DU definition, classification, and categorization. Digital ulcers require a multidisciplinary approach with close cooperation between physicians and specialist nursing and other allied health professionals to guarantee the appropriate treatment and provide patient education. Local wound bed management is necessary for all DUs and is combined with systemic (pharmacologic) treatments. When treating a DU, the clinician should actively review the therapeutic strategy to prevent further DUs, including the level of systemic disease control, and monitor closely for the development of DU complications, including infection and progression to gangrene. Despite a wide available therapeutic armory, a number of unmet needs and challenges remain that that require resolution to optimize DU management. CONCLUSIONS AND RELEVANCEA practical approach to DU management, including local wound bed management and systemic treatments, is useful. Digital ulcers are of interest to a broad range of dermatologists, rheumatologists, and other physicians providing care for patients with SSc. Careful clinical assessment and prompt intervention can substantially modify the clinical course of DUs in SSc.

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Raynaud’s Phenomenon, Digital Ulcers and Nailfold Capillaroscopy

Hughes,

Matucci-Cerinic

2024

Scleroderma

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Patient experiences of digital ulcer development and evolution in systemic sclerosis

Cited by 14 publications

References 7 publications

What narrative devices do people with systemic sclerosis use to describe the experience of pain from digital ulcers: a multicentre focus group study at UK scleroderma centres

What narrative devices do people with systemic sclerosis use to describe the experience of pain from digital ulcers: a multicentre focus group study at UK scleroderma centres

A Practical Approach to the Management of Digital Ulcers in Patients With Systemic Sclerosis

Raynaud’s Phenomenon, Digital Ulcers and Nailfold Capillaroscopy

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