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Digital ulcers (DUs) are a major cause of disease-related morbidity and difficult to treat vascular complication of systemic sclerosis (SSc). Demonstrating treatment efficacy has traditionally focussed upon clinician assessment of DUs alone. No existing patient reported outcome (PRO) instrument captures the multi-faceted impact of SSc-DU. We report the findings of a multi-centre qualitative research study exploring the patient experience of SSc-DU.
Patient focus groups (FGs) were conducted across 3 scleroderma units, following a topic guide devised by SSc patients, experts and experienced qualitative researchers. A purposive sampling framework ensured the experiences of a diverse group of patients were captured. FGs were audio recorded, transcribed, anonymised, and analysed using inductive thematic analysis. We continued FGs until thematic saturation was achieved.
Twenty-nine SSc patients with a history of DU disease participated in 4 FGs across the UK (Bath, Manchester and London). Five major inter-related themes (and sub-themes) were identified which encompass the patient experience of SSc-DUs: ‘Disabling pain and hypersensitivity’, ‘Deep and broad-ranging emotional impact’, ‘Impairment of physical and social activity’, ‘Factors aggravating occurrence, duration and impact’ and ‘Mitigating, managing and adapting’.
The patient experience of SSc-DU is multi-faceted and comprises a complex interplay of experiences associated with significant pain and morbidity. Patient experiences of SSc-DU are not captured using existing SSc-DU outcomes. Our findings shall inform the development of a novel PRO instrument to assess the severity and impact of SSc-DUs for use in future SSc-DU clinical trials.
- Systemic sclerosis (scleroderma)
- Digital Ulcers
- Qualitative Research
- Patient reported outcome (PRO)
- Patient Participation