Patients with rheumatic diseases share COVID-19 experiences

UNMC researchers Kaleb Michaud, Ph.D., and Bryant England, M.D., recently published a study about the experiences of patients who have rheumatic diseases early in the COVID-19 pandemic.

The paper demonstrates that patients need to know that it’s important to have a plan for any changes in medication, either by choice or after difficulty with access, and that health professionals need to be part of the decision making.

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Bryant England, M.D.

Dr. Michaud, lead author of the paper published recently in ACR Open Rheumatology, a journal of the American College of Rheumatology, said it was important to write the article.

“It’s been a time of seismic change, as so many of the treatments being discussed were those used to treat patients with rheumatic diseases,” said Dr. Michaud, associate professor in the UNMC Department of Internal Medicine Division of Rheumatology and Immunology. “We still don’t know what the best approach is to treat our rheumatoid patients who are at risk of getting or may have COVID-19, but we’re learning as we go and it was important to understand what our patients were experiencing as the pandemic started.”

Rheumatic diseases most often cause inflammation and can affect joints, tendons, ligaments, bones, muscles and sometimes organs. Common diseases include rheumatoid arthritis and autoimmune diseases such as lupus.

He said patients are rightly scared, anxious, and are making medical decisions on their own without consulting their doctors.

“This is happening with people who have important chronic diseases that require regular monitoring. While medical visits are being cancelled, it is still important for clinical staff to touch base with patients to help provide some guidance especially when there is so much information being shared that is not based on evidence such as the early news around hydroxychloroquine.

“We now have patients who have reported getting COVID-19 and are better understanding what symptoms may be more important to follow,” Dr. Michaud said. “We know that mental health impacts physical health and that additional work is needed to help have clear and consistent messaging on best practices for our patients even knowing that it may soon change.”

A total of 530 study participants enrolled in FORWARD, The National Databank for Rheumatic Diseases, responded to a questionnaire by email on March 25 about their symptoms, COVID‐19 testing, health care changes and related experiences during the prior two weeks. Analysis compared responses by diagnosis, disease activity and new onset of symptoms.

Of the participants, rheumatoid arthritis was the most frequent diagnosis (61%). Eleven met COVID‐19 screening criteria, of which two sought testing unsuccessfully. Six others sought testing, three were successful, and all were negative. Not quite half (42%) reported a change to their care in the prior two weeks. Qualitative analysis revealed four key themes:

  • emotions in response to the pandemic;
  • perceptions of risks from immunosuppressive medications;
  • protective measures to reduce risk of COVID‐19 infection; and
  • disruptions in accessing rheumatic disease medications including hydroxychloroquine.
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1 comment

  1. Dee Ryle says:

    Thank you for a very informative and timely article.

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