Many Autoimmune Arthritis Patients Experience Delayed Diagnoses

Many Autoimmune Arthritis Patients Experience Delayed Diagnoses

According to a recently published study by the International Foundation for Autoimmune Arthritis (IFAA), a multinational not-for-profit organization, established textbook symptoms of Autoimmune Arthritis (AIA) onset are not in line with today’s patient experiences. This inconsistency can be the root of costly delays in diagnosing these diseases, which elevates patients’ risk of developing disabilities, poorer long-term outcomes, and higher healthcare costs.

Researchers at the IFAA compared patients’ personal experiences of the early symptoms of Rheumatoid Arthritis (RA), Psoriatic Arthritis (PsA), Ankylosing Spondylitis (AS), Sjogren’s Syndrome (SS), Systemic Lupus Erythematosus (SLE), and/or Adult Onset Still’s Disease (AOSD) with those established in previously published articles and credible, widely-used resources, such as the American College of Rheumatology, National Institutes of Health, National Library of Health, and Mayo Clinic. This retrospective and quantitative study’s findings were then submitted for expert review to the following organizations: Spondylitis Association of America, Lupus UK, Sjogren’s Syndrome Foundation, and the International Still’s Disease Foundation to serve as expert reviewers.

“Something must be done to ensure these diseases are being detected early and referrals occur before the damage becomes irreversible,” explains Project Manager and IFAA CEO, Tiffany Westrich-Robertson. “We feel the missing link in solving early, proper diagnosis is failure to involve the patient in understanding the true symptoms. The patient how now spoken so it’s our job to listen and incorporate the findings into cohesive disease detection models.”

Investigators found that only about half of patients were able to meet the recommended diagnostic timeframe set by the American College of Rheumatology (ACR) and European League Against Rheumatism (EULAR), which is ideally achieved with a specialist early on in the disease onset. In fact, many patients admitted it took over 2 years before they were referred to a rheumatologist.

Aside from noting these discrepancies, the study also revealed the following:

  • Patients reported the following areas of onset in ED, regardless of diagnosis: neck, hips, back, shoulders, knees, feet, hands, wrists, and chest.
  • Additional cross-over symptoms that were prominent in all diseases included fatigue, stiffness after rest, myalgia, mental cloudiness/”brain fog”, flu-like symptoms, Raynaud’s Phenomenon, and redness and warmth around joints. One in three participants also reported swelling, fever, rash, and anemia.
  • Dry eye and dry mouth were not the highest reported early disease symptoms in SS patients (73% mouth, 60% eye); > 30% RA and SLE and > 20% of AS and PsA patients also reported extreme dryness. Additionally, while numbness and tingling in the extremities was included in the study as a sole reported symptom of SS, at least 30% of all patients also reported this symptom in early disease.

The study also attempted to explore the rate of occurrence of undifferentiated disease, and noted only 15% of patients who presented with early symptoms were given an initial undifferentiated diagnosis, with more than half reporting waiting at least 12 months for a diagnosis. These numbers show that undifferentiated AIA occurs more frequently than originally thought.

A more detailed report is available for download at This project was funded by Janssen Pharmaceutical Companies, Inc.

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