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Multicenter Qualitative Study Exploring the Patient Experience of Digital Ulcers in Systemic Sclerosis
Author(s) -
Hughes Michael,
Pauling John D.,
Jones Jennifer,
Denton Christopher P.,
Domsic Robyn T.,
Frech Tracy M.,
Herrick Ariane L.,
Khanna Dinesh,
MatucciCerinic Marco,
McKenzie Lorraine,
Saketkoo Lesley Ann,
GoobermanHill Rachael,
Moore Andrew
Publication year - 2020
Publication title -
arthritis care and research
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 2.032
H-Index - 163
eISSN - 2151-4658
pISSN - 2151-464X
DOI - 10.1002/acr.24127
Subject(s) - focus group , medicine , thematic analysis , qualitative research , nonprobability sampling , patient experience , physical therapy , health care , population , social science , environmental health , marketing , sociology , economics , business , economic growth
Objective Digital ulcers ( DU s) are a major cause of disease‐related morbidity and are a difficult‐to‐treat vascular complication of systemic sclerosis ( SS c). Demonstrating treatment efficacy has traditionally focused on clinician assessment of DU s alone. No existing patient‐reported outcome ( PRO ) instrument captures the multifaceted impact of SS c‐ DU . We report the findings of a multicenter qualitative research study exploring the patient experience of SS c‐ DU . Methods Patient focus groups were conducted across 3 scleroderma units, following a topic guide devised by SS c patients, experts, and experienced qualitative researchers. A purposive sampling framework ensured that the experiences of a diverse group of patients were captured. Focus groups were audio recorded, and information was transcribed, anonymized, and analyzed using inductive thematic analysis. We continued focus groups until thematic saturation was achieved. Results Twenty‐nine SS c patients with a history of DU disease participated in 4 focus groups across the UK (Bath, Manchester, and London). Five major interrelated themes (and subthemes) were identified that encompass the patient experience of SS c‐ DU : 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. Conclusion The patient experience of SS c‐ DU is multifaceted and comprises a complex interplay of experiences associated with significant pain and morbidity. Patient experiences of SS c‐ DU are not captured using existing SS c‐ DU outcomes. Our findings will inform the development of a novel PRO instrument to assess the severity and impact of SS c‐ DU for use in future SS c‐ DU clinical trials.