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 multi-faceted 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 multi-faceted nature of SSc-DUs and will hopefully support the development of a novel PROM to assess the severity and impact of SSc-DUs.