Symptom experience of limited cutaneous systemic sclerosis from the Patients' perspective: A qualitative study ✰,✰✰,★,★★ .

Autor: Lescoat A; Department of Internal Medicine and Clinical Immunology, Rennes University Hospital, Rennes, France; Univ Rennes, CHU Rennes, Inserm, EHESP, Irset (Institut de Recherche en Santé, Environnement et Travail) - UMR_S 1085, Rennes, France; Michigan Scleroderma Program, University of Michigan, Ann Arbor, MI, USA., Murphy SL; Michigan Scleroderma Program, University of Michigan, Ann Arbor, MI, USA; Department of Physical Medicine & Rehabilitation, University of Michigan, USA; VA Ann Arbor Healthcare System, Geriatric Research Education and Clinical Center, GRECC, Ann Arbor, MI USA. Electronic address: sumurphy@med.umich.edu., Chen YT; Michigan Scleroderma Program, University of Michigan, Ann Arbor, MI, USA; Department of Physical Medicine & Rehabilitation, University of Michigan, USA., Vann N; Michigan Scleroderma Program, University of Michigan, Ann Arbor, MI, USA., Galdo FD; Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds, UK; Leeds Biomedical Research Centre, National Institute for Health Research, Leeds, UK., Cella D; Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, 625 Michigan Ave, 21st Floor, Chicago, IL, 60611, USA., Buch MH; Centre for Musculoskeletal Research, School of Biological Sciences, Faculty of Biology, Medicine & Health, University of Manchester, Manchester, UK.; NIHR Manchester Biomedical Research Centre, Manchester Academic Health Science Centre, Manchester University Foundation Trust, Manchester, UK., Khanna D; Michigan Scleroderma Program, University of Michigan, Ann Arbor, MI, USA; Division of Rheumatology, University of Michigan, Ann Arbor, Michigan, USA.
Jazyk: angličtina
Zdroj: Seminars in arthritis and rheumatism [Semin Arthritis Rheum] 2022 Feb; Vol. 52, pp. 151926. Date of Electronic Publication: 2021 Nov 07.
DOI: 10.1016/j.semarthrit.2021.11.003
Abstrakt: Objectives: Limited cutaneous systemic sclerosis (lcSSc) is the largest subgroup of people with SSc, but little is known about symptom experience from the patients' perspective. This study aimed to comprehensively identify domains and symptoms reported as bothersome by patients with lcSSc and to analyze themes and sub-themes capturing symptom experience in this population.
Methods: Focus groups of patients with lcSSc were conducted using a structured guide. Patients were recruited based on an a priori purposive framework to include men and women with SSc. Focus groups were recorded, transcribed, anonymized, and analyzed using the RADaR technique (rigorous and accelerated data reduction) combined with iterative, deductive and inductive approaches.
Results: Four 2-hour Focus groups comprising participants with lcSSc were conducted (N = 26). Ninety-four symptoms were identified with 22 domains. Symptoms from the following domains were mentioned in all Focus groups: skin, musculoskeletal (MSK), cardiac, pulmonary, gastro-intestinal (GI) manifestations, fatigue, sleep, Raynaud's phenomenon (RP), pain, and digital ulcers. The three most cited domains in a pre-meeting survey were GI, RP and MSK. Seven themes defining symptom experience were identified: difficulty attributing symptoms to this complex systemic disease, influence of symptom temporality, impairment of emotional well-being, limitations in functioning (including several sub-themes of functioning), survival, symptoms management and uncertainty.
Conclusion: This study comprehensively identified domains and symptoms considered bothersome from the perspective of patients with lcSSc and summarized patient experience of lcSSc-related symptoms. This study is the first step in the design of a future combined response index dedicated to lcSSc that could foster specific research on this subpopulation of patients.
Competing Interests: Declaration of Competing Interest Authors have nothing to declare.
(Copyright © 2021 Elsevier Inc. All rights reserved.)
Databáze: MEDLINE
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