RT Journal Article
SR Electronic
T1 Perceptions of Patients, Caregivers, and Healthcare Providers of Idiopathic Inflammatory Myopathies: An International OMERACT Study
JF The Journal of Rheumatology
JO J Rheumatol
FD The Journal of Rheumatology
SP 106
OP 111
DO 10.3899/jrheum.180353
VO 46
IS 1
A1 Christopher A. Mecoli
A1 Jin Kyun Park
A1 Helene Alexanderson
A1 Malin Regardt
A1 Merrilee Needham
A1 Ingrid de Groot
A1 Catherine Sarver
A1 Ingrid E. Lundberg
A1 Beverley Shea
A1 Marianne de Visser
A1 Yeong Wook Song
A1 Clifton O. Bingham 3rd
A1 Lisa Christopher-Stine
YR 2019
UL http://www.jrheum.org/content/46/1/106.abstract
AB Objective. Patient-reported outcome measures (PROM) that incorporate the patient perspective have not been well established in idiopathic inflammatory myopathies (IIM). As part of our goal to develop IIM-specific PROM, the Outcome Measures in Rheumatology (OMERACT) Myositis special interest group sought to determine which aspects of disease and its effects are important to patients and healthcare providers (HCP).Methods. Based on a prior qualitative content analysis of focus groups, an initial list of 24 candidate domains was constructed. We subsequently conducted an international survey to identify the importance of each of the 24 domains to be assessed in clinical research. Patients with IIM, their caregivers, and HCP treating IIM completed the survey.Results. In this survey, a total of 638 respondents completed the survey, consisting of 510 patients, 101 HCP, and 27 caregivers from 48 countries. Overall, patients were more likely to rank “fatigue,” “cognitive impact,” and “difficulty sleeping” higher compared with HCP, who ranked “joint symptoms,” “lung symptoms,” and “dysphagia” higher. Both patients and providers rated muscle symptoms as their top domain. In general, patients from different countries were in agreement on which domains were most important. One notable exception was that patients from Sweden and the Netherlands ranked lung symptoms significantly higher compared to other countries including the United States and Australia (mean weighted rankings of 2.86 and 2.04 vs 0.76 and 0.80, respectively; p < 0.0001).Conclusion. Substantial differences exist in how IIM is perceived by patients compared to HCP, with different domains prioritized. In contrast, patients’ ratings across the world were largely similar.