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Multinational Qualitative Research Study Exploring the Patient Experience of Raynaud's Phenomenon in Systemic Sclerosis

Robson, Joanna; Pauling, John D.; Domsic, Robyn T.; Saketkoo, Lesley A.; Almeida, Celia; Withey, Jane; Jay, Hilary; Fench, T; Ingegnoli, Francesca; Dures, Emma; Robson, Jo C; McHugh, Neil J.; Herrick, Ariane L.; Matucci-Cerinic, Marco; Khanna, Dinesh; Hewlett, Sarah


Joanna Robson

John D. Pauling

Robyn T. Domsic

Lesley A. Saketkoo

Jane Withey

Hilary Jay

T Fench

Francesca Ingegnoli

Emma Dures
Associate Professor in Rheumatology and Self-management

Jo Robson
Consultant Associate Professor in Rheumatology

Neil J. McHugh

Ariane L. Herrick

Marco Matucci-Cerinic

Dinesh Khanna


© 2017, American College of Rheumatology Objective: Raynaud's phenomenon (RP) is the most common manifestation of systemic sclerosis (SSc). 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 SSc-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 SSc-RP. Methods: Focus groups of SSc 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, SSc patients, and SSc 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 SSc 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 SSc-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 SSc-RP. Conclusion: We have explored the patient experience of SSc-RP in a diverse and representative SSc 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 SSc-RP, comprising domains/items grounded in the patient experiences of SSc-RP identified in this study, is underway.


Robson, J., Pauling, J. D., Domsic, R. T., Saketkoo, L. A., Almeida, C., Withey, J., …Hewlett, S. (2018). Multinational Qualitative Research Study Exploring the Patient Experience of Raynaud's Phenomenon in Systemic Sclerosis. Arthritis Care and Research, 70(9), 1373-1384.

Journal Article Type Article
Acceptance Date Nov 16, 2017
Online Publication Date Nov 21, 2017
Publication Date Sep 1, 2018
Journal Arthritis Care and Research
Print ISSN 2151-464X
Electronic ISSN 2151-4658
Publisher Wiley
Peer Reviewed Peer Reviewed
Volume 70
Issue 9
Pages 1373-1384
Keywords sclerosis, Raynaud's phenomenon, patient experience
Public URL
Publisher URL
Additional Information Additional Information : This is the peer reviewed version of the following article: Pauling, J., Domsic, R., Saketkoo, L., Almeida, C., Withey, J., Jay, H., Fench, T., Ingegnoli, F., Dures, E., Robson, J., McHugh, N., Herrick, A., Matucci-Cerinic, M., Khanna, D. and Hewlett, S. (2017) A multi-national qualitative research study exploring the patient experience of Raynaud’s phenomenon in systemic sclerosis. Arthritis Care & Research. ISSN 2151-464X, which has been published in final form at This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving.


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