Inspiration for 2020: The story of the OMERACT working group and patient involvement in creating patient reported outcomes
admedicum is proud to share the story of the OMERACT myositis working group as inspiration for the new year
Myositis or Idiopathic inflammatory myopathy (IIM) is a group of very rare diseases characterised by inflammation of the skeletal muscles, leading to muscle wasting, weakness and reduced quality of life. Heart and lungs may also be affected and this may lead to a shortened life expectancy.
The OMERACT (Outcome Measures in Rheumatology) myositis working group (see above photo) coordinated patient input into the development of improved outcome measures for IIM by conducting an international survey with patients, caregivers, and healthcare professionals to identify which outcomes with regard to the quality of life matter most. Their goal is to develop a myositis specific PROM to be used in clinical research in IIM.
The survey was available in 4 languages and shared internationally by patient groups, and on multiple listservs (through patient organisations, newsletters) reaching a diverse set of stakeholders.
In one of the two publications by the group on the survey results, there was a total of 638 respondents to the survey, consisting of 510 people living with IIM, 101 healthcare providers (HCP), and 27 caregivers from 48 countries.
The survey found patients were more likely to highly rate fatigue, cognitive effects, and difficulty sleeping as the most important outcome measures, while care providers were more likely to highly rate joint symptoms, lung symptoms, and dysphagia.
The most important outcomes turned out to be muscle symptoms, fatigue, pain, and physical activity, but also lung-, skin- and joint symptoms. Before this, doctors were likely to dismiss the idea that myositis affected aspects like fatigue and pain.
These substantial differences in disease perception demonstrate the importance of conducting research on outcome measures with patients and not only relying on the opinions of healthcare providers who lack the first-hand experience of living with IIM.
A powerful and important aspect of the OMERACT methodology is the integration of patients as equal stakeholders in every step of the process. The publications of the myositis working group mark a critical step in the development and adoption of valid outcome measures for patients living with IIM.
Now, patient preferences in outcome measures for IIM are part of scientific literature and can be consulted when designing clinical trials and in the clinical care setting.
Patient advocate Ingrid de Groot from the Netherlands (seated in the above photo) is one of the two Patient Research Partners in the OMERACT group and was instrumental in involving patients from her country by promoting the survey at every patient meeting she attended.
As a result, the Netherlands was second to the United States in terms of the number of responses. This shows the power of one single person to motivate others and advance knowledge of the disease.
Going forward, Ingrid and the OMERACT group remain focused on instrument selection for measuring the aspects of the disease that patients found most burdensome: fatigue, pain, physical activity, and muscular symptoms.
They will be conducting another patient survey this Spring to ask patients if the instruments they have selected so far as suitable or new Patient Reported Outcome Measures specific to IIM still need to be developed.
We feel proud and honored to support the Myositis OMERACT working group in communicating this amazing patient-driven success! We strongly believe in patient power and the involvement of patient expertise to be key to the development of future treatments and products.
Read the full paper: Mecoli, et al: IIM perceptions
Outcome Measures in Rheumatoid Arthritis Clinical Trials (OMERACT) is a methodology aimed at standardizing and improving outcome measures. The methodology requires the inclusion of patient research partners in the working group and the involvement of researchers from at least 3 continents to ensure outcomes are relevant across cultures.
Learn more at https://omeract.org/
1. Mecoli CA, Park JK, Alexanderson H, Regardt M, Needham M, de Groot I, et al. Perceptions of patients, caregivers, and healthcare providers of idiopathic inflammatory myopathies: an international OMERACT study. J Rheumatol 2019;46:106–111