Patient-reported outcome measures that incorporate the patient perspective have not been well established in inflammatory myositis. We therefore conducted a large, international survey to better understand what areas are viewed as important by different groups. Our results indicate that substantial differences exist in how myositis is perceived by patients compared to healthcare providers, with different items prioritized. In contrast, patients’ views across the world were largely similar.
Why was the study done?
To date, it is largely unknown what issues myositis patients feel are most important about their disease, and how these areas compare and contrast with those of their healthcare team. As part of our goal to develop patient-reported outcome measures for myositis patients, the Outcome Measures in Rheumatology (OMERACT) Myositis special interest group sought to determine which aspects of the disease and its effects are important to patients and healthcare providers. The Myositis special interest group consists of healthcare providers and patients from the USA, the Netherlands, Sweden, South Korea, and Australia.
How was the study done?
An international survey was sent to patients with inflammatory myositis (dermatomyositis, polymyositis, necrotizing myopathy, or antisynthetase syndrome), their primary caregivers, and healthcare providers to identify the important items that, from their perspective, should be assessed in clinical research.
What were the major findings?
In this survey, a total of 638 individuals completed the survey, consisting of 510 patients, 101 healthcare providers, and 27 caregivers from 48 countries. Overall, patients were more likely to rank “fatigue,” “cognitive impact,” and “difficulty sleeping” higher compared with healthcare providers, who ranked “joint symptoms,” “lung symptoms,” and “trouble swallowing” 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 to them. 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.
What is the impact of this work?
This work highlights the discordance between what patients and healthcare providers view as the important features of myositis. This work will further inform the development of patient-reported outcome measures to be used in research – outcomes which are rooted in the patient perspective.
This research supported by:
- The Jerome L. Greene Foundation