The most significant subset of people with systemic sclerosis (SSc) was limited cutaneous SSc (lcSSc); however, little is known regarding symptom experience from the patients’ perspective. For a study, the researchers sought to completely identify domains and symptoms that patients with lcSSc regarded as bothersome and analyze themes and sub-themes that captured symptom experience in the cohort study. A structured framework was used to conduct focus groups of patients with lcSSc. Patients with SSc were recruited using an a priori purposeful framework that included both men and women. The RADaR technique (rigorous and accelerated data reduction) was paired with iterative, deductive, and inductive approaches to record, transcribe, anonymize, and analyze focus groups. N=26 persons with lcSSc participated in four 2-hour focus groups. There were 94 symptoms total, divided into 22 domains. Skin, musculoskeletal (MSK), cardiac, pulmonary, and gastrointestinal (GI) symptoms, weariness, sleep, Raynaud’s phenomenon (RP), discomfort, and digital ulcers were all highlighted in all Focus groups. GI, RP, and MSK were the top 3 domains mentioned in a pre-meeting survey. Complexity attributing symptoms to the complex systemic disease, the influence of symptom temporality, impairment of emotional well-being, limitations in functioning (including several sub-themes of functioning), survival, symptoms management, and uncertainty were identified as 7 themes that define symptom experience. The study compiled a list of themes and symptoms that patients with lcSSc found troublesome, as well as a summary of patient experiences with lcSSc-related symptoms. The research conducted was the first step toward creating a future combined response index specialized to lcSSc patients, which will allow for further focused research on this patient group.
Source:www.sciencedirect.com/science/article/abs/pii/S0049017221001992
