More work needs to be done to make sure EULAR standards of care are used across Europe
Rheumatoid arthritis is a chronic inflammatory disease that can affect a person’s joints, and may cause pain and disability. Rheumatoid arthritis affects people of all ages, and is more common in women than men. In 2008, the European Musculoskeletal Conditions Surveillance and Information Network was set up
(eumusc.net). The project aimed to raise and standardise the quality of care for people in Europe with rheumatic diseases and diseases of the muscles and skeleton. As part of eumusc.net, standards of care for rheumatoid arthritis were developed, and published in 2008. This is a list of 20 points that cover important aspects of care that all people should receive.
WHAT DID THE AUTHORS HOPE TO FIND?
In this present study the authors wanted to see whether people with rheumatoid arthritis and rheumatologists across Europe think there are gaps between the recommended standards, and how people with rheumatoid arthritis are actually cared for in reality. They also wanted to find out if people with rheumatoid arthritis think there are barriers that stop the care standards being met.
WHO WAS STUDIED?
The study included 1873 people with rheumatoid arthritis from 27 European countries. 1131 rheumatologists from 35 European countries also took part.
HOW WAS THE STUDY CONDUCTED?
This was a survey. Both the patients and rheumatologists were asked to fill in a questionnaire on the 20 items on the standard of care list. They were asked to rate the importance and the level of care received (or given) for each item on a scale from 0–10, 10 being most important or best. The authors used the scores to work out the perceived importance. They looked to see whether the standards were being met, and if there were gaps in care. They also wanted to see whether individual patient or country characteristics were associated with higher care gaps.
WHAT WERE THE MAIN FINDINGS OF THE STUDY?
Both the patients and rheumatologists confirmed that the 20 items for standard care in rheumatoid arthritis are important. Over 90% of patients thought 15 of the items were important, and over 90% of rheumatologists thought 17 items were important. They also found that patients reported more care gaps than rheumatologists. One of the items on the list is that people should get a diagnosis from a professional within 6 weeks of their rheumatoid arthritis symptoms starting. This item had the highest gap between the recommendation and actual care as reported by rheumatologists and patients. The study also found that there is a need for more appropriate information and training.
Another important finding was that the standard of care varies between countries. Rheumatologists in
low-income countries and new or non-EU countries reported higher care gaps than their colleagues in wealthier and/or EU member states. A surprising finding was that people with rheumatoid arthritis in new or non-EU countries report less problems or gaps for six areas of care. The authors think this is because the patients in those countries do not think these standards are important. This means the findings may reflect differences in the priorities of people living in different regions.
The study found that 94% of people with rheumatoid arthritis said they were keen to actively manage their disease. However, access to healthcare and some insurance coverage limitations were the main barriers to people getting the care according to the standards.
ARE THESE FINDINGS NEW?
Yes. The authors think this is the first study in Europe to assess and compare the perceived implementation of the list of 20 standards of care since they were developed.
WHAT ARE THE LIMITATIONS OF THE STUDY?
There are some limitations. The most important is that the study could not ensure representative samples for each country, so we have to be careful how we interpret and use the results. Also, it only included rheumatologists, not any other healthcare professionals who look after people with rheumatoid arthritis, such as nurses.
Evidence on the relative importance of some care standards compared to others is also missing.
WHAT DO THE AUTHORS PLAN ON DOING WITH THIS INFORMATION?
The authors have shared their findings with people involved in the care of rheumatoid arthritis. They hope the results will help to improve care.
WHAT DOES THIS MEAN FOR ME?
If you have rheumatoid arthritis, there are standards of care that have been developed to help make sure everyone in Europe gets the same level of treatment. But there are some differences in how they are used depending on the healthcare system in your country. Being aware of what the standards are can help you to engage with your doctor to get the most out of your treatment. If you are interested in reading about the standards, you can find patient versions in more than 20 languages at eumusc.net.
If you have any concerns about your disease or its treatment, you should talk to your doctor.
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Date prepared: October 2020
Summary based on research article published on: 01 September 2020
From: Meisters R, et al. EULAR/Eumusc.net Standards of Care for rheumatoid arthritis: cross-sectional analyses of importance, level of implementation and care gaps experienced by patients and rheumatologists across 35 European countries. Ann Rheum Dis 2020;79:1423–1431. doi:10.1136/annrheumdis-2020-217520.
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