Dataset Information

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.

ABSTRACT:

Objectives

Digital 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.

Design

Focus 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.

Setting

Three specialist scleroderma units across the UK (Bath, Manchester and London).

Participants

Four 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.

Results

Five 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'.

Conclusion

The 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.

SUBMITTER: Jones J

PROVIDER: S-EPMC7295424 | biostudies-literature | 2020 Jun

REPOSITORIES: biostudies-literature

ACCESS DATA

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.

Jones Jennifer J Hughes Michael M Pauling John J Gooberman-Hill Rachael R Moore Andrew J AJ

BMJ open 20200611 6

<h4>Objectives</h4>Digital 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.<h4>Design</h4>Focus groups with people diagnosed with SSc who had experienced DUs were conducted using a topic guide developed ...[more]

PMID: 32532783

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Dataset Information

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.

Objectives

Design

Setting

Participants

Results

Conclusion

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.

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