Let’s talk about pain, the new important domain to assess and address in adult myositis — a qualitative study: a MIHRA collaboration

Abstract Objectives Pain is a critical symptom to assess in clinical care and trials. This study aimed to explore experiences of pain in adults with myositis. Methods Patients were strategically identified to represent different myositis-diagnosis, duration and self-reported pain. 10 adults with polymyositis (n = 5), dermatomyositis, (n = 3), or antisynthetase syndrome (n = 2), 6 women, age-range 28-71 years, median VAS pain score 59 mm (range 30-84 mm), participated in an individual, semi-structured interview. Interviews were audiotaped, transcribed and analysed by inductive qualitative content analysis. Results Three overarching themes emerged; 1) Myositis pain—a new experience: Myositis-related pain is unique and heterogeneous as to character, localization, and duration. It can be chronic and fluctuate depending on disease activity. Adapted exercise and medical treatment can reduce pain. Activity balance and various coping strategies are keys to manage daily activities and pain. 2) Pain impacts my life and my significant others: Myositis-related pain impact self-perception and roles in life with additional impact on family and friends. They expressed frustration and sadness about other’s inability to understand their pain. 3) Education and support are key: Participants emphasized the importance of knowledgeable health care providers to reduce the misinformation that myositis is a painless disease. Conclusions Pain is a key symptom of myositis, impacting many aspects of daily life and varies in character, location, and duration. Although pain can be treated, it may persist as a chronic symptom, often worsening during flares. Health-care professionals should recognise and address myositis-related pain early and consistently throughout the disease course.