Susan L Murphy1,2, Alain Lescoat3,4,5, Mary Alore6, Michael Hughes7, John D Pauling8, Maya Sabbagh6, Dinesh Khanna5. 1. Department of Physical Medicine and Rehabilitation, University of Michigan, 24 Frank Lloyd Wright Drive, Lobby M Suite 3100, Ann Arbor, MI, 48105, USA. sumurphy@umich.edu. 2. VA Ann Arbor Health Care System, Geriatric Research, Education, and Clinical Center (GRECC), 2215 Fuller Rd, Ann Arbor, MI, 48105, USA. sumurphy@umich.edu. 3. Department of Internal Medicine and Clinical Immunology, CHU Rennes, University of Rennes 1, Rennes, France. 4. Univ Rennes, CHU Rennes, Inserm, EHESP, Irset (Institut de Recherche en Santé, Environnement et Travail) - UMR_S 1085, Rennes, France. 5. Department of Internal Medicine, Division of Rheumatology, Scleroderma Program, University of Michigan, 7C27 NIB 300 North Ingalls Street, Ann Arbor, MI, 48109, USA. 6. Peer Mentors Program, University of Michigan Scleroderma Program, 7C27 NIB 300 North Ingalls Street, Ann Arbor, MI, 48109, USA. 7. Department of Rheumatology, Royal Hallamshire Hospital, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK. 8. Royal National Hospital for Rheumatic Diseases (at Royal United Hospitals), Bath, UK.
Abstract
INTRODUCTION/ OBJECTIVES: To examine how people define Raynaud's phenomenon (RP) based on their lived experiences and explore if differences exist depending on primary or secondary RP diagnosis. METHOD: An international survey was sent to people with RP through health systems, foundations, and social media. Qualitative coding of responses to an open text question regarding one's own definition of RP was performed and themes were identified. The prevalence of themes among the sample and then comparisons between themes among people who self-reported primary versus secondary diagnosis of RP were performed. RESULTS: There were 1345 respondents from 45 countries (mean age 51.5 years, 93% female) who defined RP in their own words; 17% reported primary RP and 83% reported secondary RP (69% of secondary RP was scleroderma-related, n = 927). Over half defined their RP by describing the body parts affected, color changes, pain, and triggers or situations in which an episode occurs. Patients with primary RP more frequently defined RP in terms of its impact on function/quality of life and pain compared to those with secondary RP (34.5% versus 25.3%, respectively, p=0.004; 54.0% versus 46.8%, p=0.05). Patients with secondary RP more frequently included specific body parts, color change, the management of attacks, and other digital vascular complications in their definition of RP. CONCLUSIONS: We have identified differences in how people with primary and secondary RP define RP, in terms of how they feel and function. Our findings have implications for the domains of outcome measures for assessing RP within different patient populations. Key Points • Pain is more often mentioned in primary RP and color change in secondary RP. • Over 25% of patients included reduced the quality of life as part of their RP definition. • The concept of "attack" is used to define RP by only 2% of patients.
INTRODUCTION/ OBJECTIVES: To examine how people define Raynaud's phenomenon (RP) based on their lived experiences and explore if differences exist depending on primary or secondary RP diagnosis. METHOD: An international survey was sent to people with RP through health systems, foundations, and social media. Qualitative coding of responses to an open text question regarding one's own definition of RP was performed and themes were identified. The prevalence of themes among the sample and then comparisons between themes among people who self-reported primary versus secondary diagnosis of RP were performed. RESULTS: There were 1345 respondents from 45 countries (mean age 51.5 years, 93% female) who defined RP in their own words; 17% reported primary RP and 83% reported secondary RP (69% of secondary RP was scleroderma-related, n = 927). Over half defined their RP by describing the body parts affected, color changes, pain, and triggers or situations in which an episode occurs. Patients with primary RP more frequently defined RP in terms of its impact on function/quality of life and pain compared to those with secondary RP (34.5% versus 25.3%, respectively, p=0.004; 54.0% versus 46.8%, p=0.05). Patients with secondary RP more frequently included specific body parts, color change, the management of attacks, and other digital vascular complications in their definition of RP. CONCLUSIONS: We have identified differences in how people with primary and secondary RP define RP, in terms of how they feel and function. Our findings have implications for the domains of outcome measures for assessing RP within different patient populations. Key Points • Pain is more often mentioned in primary RP and color change in secondary RP. • Over 25% of patients included reduced the quality of life as part of their RP definition. • The concept of "attack" is used to define RP by only 2% of patients.
Authors: H R Maricq; P H Carpentier; M C Weinrich; J E Keil; Y Palesch; C Biro; M Vionnet-Fuasset; M Jiguet; I Valter Journal: J Rheumatol Date: 1997-05 Impact factor: 4.666
Authors: H R Maricq; P H Carpentier; M C Weinrich; J E Keil; A Franco; P Drouet; O C Ponçot; M V Maines Journal: J Rheumatol Date: 1993-01 Impact factor: 4.666
Authors: Alain Lescoat; Susan L Murphy; Yen T Chen; Nadia Vann; Francesco Del Galdo; David Cella; Maya H Buch; Dinesh Khanna Journal: Semin Arthritis Rheum Date: 2021-11-07 Impact factor: 5.431