Quality indicators can help clinics to implement the EULAR recommendations in everyday care
Systemic lupus erythematosus (often called Lupus or SLE) is an autoimmune disease. It typically starts in women between the ages of 15 and 45. Lupus symptoms can vary from patient to patient. People with Lupus are often very tired, have joint pain, and their skin may be sensitive to sunlight. Lupus often also affects a person’s inner organs, such as their kidneys, lung, or brain. Lupus is caused by hyperactive immune cells and the production of autoantibodies. An antibody is a protein that the immune system makes to attack foreign substances in the body, such as viruses or bacteria. In autoimmune diseases, the body makes antibodies that attack its own tissues. These are called autoantibodies.
Care in SLE can be complicated by the variation in different forms of the disease, and by differences between individual patients. Quality indicators (QIs for short) are a tool used to measure the quality of care that people get, and to help improve it. QIs for lupus have been developed before, but they were not based on a comprehensive review of the available evidence.
WHAT DID THE AUTHORS HOPE TO FIND?
The authors wanted to develop a set of measurable QIs using the existing EULAR recommendations for
managing people with SLE to. They also wanted to verify how well those QIs would work in everyday clinical practice. Finally, they hoped to detect potential gaps in the care of people with lupus, and see if those gaps were linked to possible negative outcomes.
WHO WAS STUDIED?
The study looked at 220 people with SLE to validate the QI set. Everyone was being looked after in a large referral clinic in Greece.
HOW WAS THE STUDY CONDUCTED?
An initial set of QIs was developed using evidence from a review of the published literature. A panel of experts then assessed the validity and feasibility of the proposed QIs, and gave their opinions. The QIs look at three main areas: screening, treatment, and monitoring. Within each area, the authors developed a list of statements that say what should be done in a number of different scenarios. In total, 18 QIs were selected.
This final set of QIs was tested in a group of people with SLE. Some items were tested by looking at people’s medical records. Others were tested using interviews or questionnaires. The results of the validation exercise were used to give a percentage value for each QI. These numbers showed whether people in the study clinic were receiving the recommended care.
WHAT WERE THE MAIN FINDINGS OF THE REVIEW?
The main finding suggested that overall people received about 54% of the recommended care. There was a lot of variability between different QIs. For example, there were low rates of adherence to the recommendations for items related to cardiovascular protection, reproductive health counselling and osteoporosis. However, there was more moderate adherence to recommendations about vaccination, and high rates of adherence concerning sunscreen protection.
Despite these variable rates, the authors did not find that there was a strong link between non-adherence to QIs and people having poor disease outcomes. A possible explanation is that adhering to one single QI may not be enough to provide a good outcome if it is not combined with consistent and adequate care in other areas.
ARE THESE FINDINGS NEW?
Yes. This is the first comprehensive set of QIs in SLE based on an extensive review of the various aspects of the disease, and done as part of the EULAR management recommendations.
WHAT ARE THE LIMITATIONS OF THE STUDY?
The main limitation was that the duration of follow-up was quite short. Also, the data represent the experience of just one academic centre. This might mean that the results are not representative of other clinical settings and non-academic centres, where gaps in patient care may be even bigger. More studies will be needed to validate these QIs in different settings.
WHAT DO THE AUTHORS PLAN ON DOING WITH THIS INFORMATION?
The authors are not planning any additional studies at this time. But they suggest that the QIs can be used as a checklist by clinics to improve the care of people with SLE, and help them apply the EULAR recommendations.
WHAT DOES THIS MEAN FOR ME?
If you have Lupus, your care team might use QIs to check whether you are receiving the best care. Some people might be asked to complete a questionnaire. Achieving quality healthcare in line with the most recent recommendations increases the chances of you having good outcomes.
If you have any concerns about your disease or its treatment, you should speak to your doctor.
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Date prepared: August 2021
Summary based on research article published on: 23 June 2021
From: Chavatza K, et al. Quality indicators for systemic lupus erythematosus based on the 2019 EULAR recommendations: development and initial validation in a cohort of 220 patients. Ann Rheum Dis 2021;80:1175–1182. doi:10.1136/annrheumdis-2021-220438
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