COMET Initiative | Patients’ perspectives on systemic sclerosis-related Raynaud's phenomenon in the feet: A qualitative study from the OMERACT Foot and Ankle Working Group

Patients’ perspectives on systemic sclerosis-related Raynaud's phenomenon in the feet: A qualitative study from the OMERACT Foot and Ankle Working Group

Objective
To explore, from patients’ perspectives, the symptoms and impact of Raynaud's phenomenon (RP) on the feet of patients with systemic sclerosis (SSc-RP), and to identify which foot-related domains are important to patients.

Methods
Forty participants (34 women) with SSc-RP took part in one of six focus groups held in the United Kingdom or United States. Participants were purposively sampled to ensure diversity in disease type, duration, and ethnicity. The topic guide included questions on RP impact, self-management, and treatment expectations. Qualitative content analysis was employed to identify key concepts in the data relating to foot-specific symptoms and their impact. Themes were organized by corresponding domains of potential importance.

Results
Twenty-eight participants (70 %) reported experiencing RP in their feet. Five themes were identified corresponding to domains of potential importance: temperature changes, pain, cramping and stiffness, numbness, and color changes. These issues negatively affected participants’ lives, impairing walking, driving, and socializing, and causing issues with footwear and hosiery.

Conclusions
This large qualitative study exploring the experiences of patients with SSc-RP in the feet identified several key domains of high importance to patients. SSc-RP is common in the feet, presents in several patterns, and impacts multiple aspects of patients’ lives. These findings indicate where future foot-specific interventions for RP could be targeted. Findings from this study improve understanding of what domains are important to patients with SSc-RP affecting the feet and will contribute to the development of a core outcome set for foot and ankle disorders in rheumatic and musculoskeletal diseases.

Aim

To explore, from patients’ perspectives, the symptoms and impact of Raynaud's phenomenon (RP) on the feet of patients with systemic sclerosis (SSc-RP), and to identify which foot-related domains are important to patients.

Contributors

Lara S. Chapman, Begonya Alcacer-Pitarch, John D. Pauling, Caroline A. Flurey, Anthony C. Redmond, Pamela Richards, Ariane L. Herrick, Peter A. Merkel, Susanna Proudman, Hylton B. Menz, Philip S. Helliwell, Marian T. Hannan, Robyn T. Domsic, Lesley A. Saketkoo, Beverley Shea, Heidi J. Siddle

Publication

Journal: Seminars in Arthritis and Rheumatism
Volume: 65
Issue:
Pages: -
Year: 2024
DOI: 10.1016/j.semarthrit.2024.152372

Further Study Information

Current Stage: Completed
Date:
Funding source(s): Lara Chapman is funded by a Health Education England (HEE)/National Institute for Health Research (NIHR) Clinical Doctoral Research Fellowship (ID NIHR302173). Dr Begonya Alcacer-Pitarch is funded by a HEE/NIHR Clinical Lectureship (ID ICA-CL-2018–04-ST2–015). Dr Heidi Siddle is funded by a HEE/NIHR Senior Clinical Lectureship (ID ICA-SCL-2018–04-ST2–004). Prof Anthony Redmond is a NIHR Senior Investigator. The views expressed in this publication are those of the authors and not necessarily those of NIHR, University of Leeds NHS or the UK Department of Health and Social Care.

Health Area

Disease Category: Rheumatology

Disease Name: Foot and ankle disorders

Target Population

Age Range: 18 - 100

Sex: Either

Nature of Intervention: Any

Stakeholders Involved

- Consumers (patients)

Study Type

- Patient perspectives

Method(s)

- Focus group(s)

Forty participants (34 women) with SSc-RP took part in one of six focus groups held in the United Kingdom or United States. Participants were purposively sampled to ensure diversity in disease type, duration, and ethnicity. The topic guide included questions on RP impact, self-management, and treatment expectations. Qualitative content analysis was employed to identify key concepts in the data relating to foot-specific symptoms and their impact. Themes were organized by corresponding domains of potential importance.