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Multinational Qualitative Research Study Exploring the Patient Experience of Raynaud's Phenomenon in Systemic Sclerosis
Author(s) -
Pauling John D.,
Domsic Robyn T.,
Saketkoo Lesley A.,
Almeida Celia,
Withey Jane,
Jay Hilary,
Frech Tracy M.,
Ingegnoli Francesca,
Dures Emma,
Robson Joanna,
M Neil J.,
Herrick Ariane L.,
MatucciCerinic Marco,
Khanna Dinesh,
Hewlett Sarah
Publication year - 2018
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.23475
Subject(s) - focus group , qualitative research , thematic analysis , nonprobability sampling , medicine , cohort , population , grounded theory , patient experience , psychology , health care , pathology , social science , environmental health , marketing , sociology , economics , business , economic growth
Objective Raynaud's phenomenon ( RP ) is the most common manifestation of systemic sclerosis ( SS c). RP is an episodic phenomenon, not easily assessed in the clinic, leading to reliance on self‐report. A thorough understanding of the patient experience of SS c‐ RP is essential to ensuring that patient‐reported outcome ( PRO ) instruments capture domains important to the target patient population. We report the findings of an international qualitative research study investigating the patient experience of SS c‐ RP . Methods Focus groups of SS c patients were conducted across 3 scleroderma centers in the US and UK , using a topic guide and a priori purposive sampling framework devised by qualitative researchers, SS c patients, and SS c experts. Focus groups were audio recorded, transcribed, anonymized, and analyzed using inductive thematic analysis. Focus groups were conducted until thematic saturation was achieved. Results Forty SS c patients participated in 6 focus groups conducted in Bath ( UK ), New Orleans (Louisiana), and Pittsburgh (Pennsylvania). Seven major themes were identified that encapsulate the patient experience of SS c‐ RP : physical symptoms, emotional impact, triggers and exacerbating factors, constant vigilance and self‐management, impact on daily life, uncertainty, and adaptation. The interrelationship of the 7 constituent themes can be arranged within a conceptual map of SS c‐ RP . Conclusion We have explored the patient experience of SS c‐ RP in a diverse and representative SS c cohort and identified a complex interplay of experiences that result in significant impact. Work to develop a novel PRO instrument for assessing the severity and impact of SS c‐ RP , comprising domains/items grounded in the patient experiences of SS c‐ RP identified in this study, is underway.