Early Symptoms of AiArthritis

An investigation into patient-reported symptoms of early disease and onset experiences.

Starting in 2013, we began the initial work to investigate patient-reported symptoms of early disease in 781 patients diagnosed with Rheumatoid Arthritis, Psoriatic Arthritis, Ankylosing Spondylitis, Sjogren's Syndrome, Systemic Lupus Erythematosus, or Adult Onset Still's Disease. We compared them to existing symptoms lists published by medically respected health agencies including the American College of Rheumatology, National Institutes of Health, National Library of Health, and Mayo Clinic.

The work conducted in this project is the basis for our continued efforts to collect patient-reported symptoms in early disease, which we will use to develop early detection materials for both the public and medical professionals (i.e., primary care physicians, emergency rooms).

  • Severe Fatigue

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    • Disclaimer: The results of this investigation should not be used as a substitute for the advice of a licensed physician. All data reported must be
    interpreted in the context of a patient's clinical data using reasonable medical judgment. Within the parameters of this project, specific cause for onset of tenderness or newsymptoms cannot be determined and, although reported by the patient as an initial onset in this time frame, it may or may not be associated with the progression of their diagnosed disease.



    Rationale 

    Patients with Autoimmune or Autoinflammatory diseases with Arthritis as a major component, report a complex mix of onset symptoms which do not necessarily match traditionally understood symptom models. This broad symptom presentation can lead to misdiagnosis and delay in detection, referrals, diagnosis, and treatment, and thus to greater physical limitations, disability, poorer long-term outcomes, and higher costs for care than when the diseases are diagnosed and treated within recommended time frames. 

    Furthermore, due to complication in symptom detection and clear disease progression, patients can be initially diagnosed with “undifferentiated” disease, which prevents them from obtaining aggressive treatment early in their disease.  Currently, this is justified because most researchers believe only 15% of patients with undifferentiated disease progress to full diagnosis; AiArthritis believes the percentage is much higher.  Failure to diagnose these patients impacts their long-term outcomes. 


    The Team

    For every project, we look for the best team of advisors to recruit so our results will be highly impactful ("Global Network Philosophy"). We enlisted the help from other organizations to review current symptom list publications, noting which are "early" symptoms and which symptoms, if any, were missing.  Based on their reports, we developed the project survey. With the help of a research mentor and professional survey development contractors, our patient leaders created a quantitative study to analyze patient-reported symptoms.

    Our advisors included:
    • Patient advocacy organizations - Spondylitis Association of America, Lupus UK, Sjögren’s Syndrome Foundation, and International Still’s Disease Foundation (ISDF).
    • Research survey development and mentoring - Floyd J. Fowler Jr., Author of Survey Research Methods in Boston, MA.
    • Research survey construction - FluidSurveys

    Project Overview

    When asked, patients reported a top frustration as the inability to obtain a diagnosis that is correct and timely. This investigation looked into symptom reporting by the patient to determine what they are experiencing in early disease and if those symptoms match what is currently published by medically respected health agencies. It was also conducted to help our organization determine which symptoms are unique to each disease, which overlap, and which occur most often in Early Disease (onset to 24 months).  By identifying if there is a higher frequency in patient-reported symptoms than currently published, the new information could help broaden the disease scope for those detecting early disease and referring to specialists for diagnosis and treatment.

    A secondary focus is to evaluate the frequency of Undifferentiated Connective Tissue Disease (UCTD) and Undifferentiated Spondyloarthropathy (USpA) presentation versus diagnosis, and the percentage of patients who progress to full-blown diseases after an initial undifferentiated diagnosis.


    Results


    Symptom publications. Patient-reported symptoms in early disease showed inconsistencies with medically respected health agency lists, and in many cases, there was a higher frequency in patient-reported symptoms, many not mentioned at all in existing publications. 

    Significant overlap in symptoms that present early in onset, regardless of the final diagnosis, was demonstrated which could indicate a stronger relationship between the group, higher frequency of co-morbidities, and/or possible misdiagnosis. For these reasons, we are dedicated to working internally, as well as with other organizations and the medical community, to continue exploring early disease presentation.

    There were clear autoimmune and autoinflammatory disease features (minus the arthritis) that occur in all patients, regardless of diagnosis.  These included:
    • Fatigue, myalgia, mental cloudiness/"brain fog", and flu-like symptoms. 
    • One clinical feature - Raynaud's Phenomenon - was only mentioned in existing publications in association with Systemic Lupus Erythematosus.  However, at least 30% of all respondents stated they experienced extreme temperature changes in their extremities in early disease. 
    • One in three respondents also reported fever, various rash types, and numbness & tingling in the extremities.
    Several differentiating factors were assessed, including disease features, degree of severity, and location of AiArthritis impact.  

  • Fatigue

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    • Not surprising, all respondents experience joint inflammation as a clinical feature within the first twelve months from onset. Other joint-related symptoms, regardless of diagnosis, included:
    • Similar onset location occurred frequently in the neck and hips ( > 50%), low and upper back, shoulders, shoulder blades, knees, chest, hands, wrists ( > 30%).  Note: specific cause of tenderness was not investigated (i.e. joint versus enthesitis).
    • Swelling and redness and warmth around joints ( > 30%)
    • Severe stiffness after rest ( > 75%) in all diseases other than Sjogren's Syndrome ( > 50%)

    Undifferentiated disease. While an average of 15% of patients initially received a diagnosis of Undifferentiated Connective Tissue Disease (UCTD) or Undifferentiated Spondylitis (USpA), more than 50% of all patients had onset symptoms for at least one or more years (in some cases over 10 times the ACR/EULAR recommended time frame to treat) but never received any undifferentiated diagnosis. For those diagnosed initially with undifferentiated disease, it took an average of 1.2 years to upgrade the diagnosis.
    Next Steps

    We aim to use this information, in conjunction with our work to collect early disease experiences in our new AiArthritis database, to develop patient-experience early detection models.  The database will be connected to our new AiArthritis Voices site,  in collaboration with FORWARD Data Bank. Together we will:
    • Continue  collecting patient-reported symptoms in early disease, which we will use to develop early detection materials for both the public and medical professionals (i.e. primary care physicians, emergency rooms).  
    • Assess clinical features, symptoms, and experiences of those not yet diagnosed with full AiArthritis diseases (Undifferentiated Disease) so we can log real time data on early disease at the time diagnosis happens.  


    Funding for the research was supported by Janssen Pharmaceutical Companies, but they were not participants in the process.

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