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

objectivesLimited 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.

methodsFocus 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.

resultsFour 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.

conclusionThis 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.