International Foundation for Autoimmune Arthritis Spearheads a Patient Approach to Meet the Demand for Early Detection, Referrals, Diagnosis, and Treatment

PHOENIX, July 21, 2015 /PRNewswire/ -- Delays in detection, referrals, diagnosis, and treatment of Autoimmune Arthritis diseases (AIA) can lead to greater physical limitations, disability, poorer long-term outcomes, and higher costs for care than when the diseases are diagnosed and treated within recommended timeframes.

Photo - http://photos.prnewswire.com/prnh/20150720/238188 
Photo - http://photos.prnewswire.com/prnh/20150720/238189

The International Foundation for Autoimmune Arthritis (IFAA), a global nonprofit led by former and current business executives and educators who are also patients, conducted a study comparing patient-reported 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 symptoms published by clinically credible and reputable resources, including the American College of Rheumatology, National Institutes of Health, National Library of Health, and Mayo Clinic. The investigation concluded that current published symptoms were not consistent with patient-reported experiences in AIA onset.

IFAA also enlisted the Spondylitis Association of America, Lupus UK, Sjogren's Syndrome Foundation, and the International Still's Disease Foundation to serve as expert reviewers. This empirical research investigation was designed as a retrospective, quantitative study that deconstructed Early Disease (ED) progression (ED: 0 ≤ 24 months from onset).

"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." Results showed that half or less of patients met the American College of Rheumatology (ACR) and European League Against Rheumatism (EULAR) recommended diagnosis time frame to refer to an appropriate specialist early in disease progression, with a significant number of patients reporting it took longer than two years to be referred to a rheumatologist.

In addition to concluding that patient-reported experiences were not consistent with current published symptoms, some interesting findings emerged, including:

• 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.  Could SS be more prominent than we realize?

A secondary focus measured frequency of initial undifferentiated disease, which concluded that while only 15% received an actual initial undifferentiated diagnosis, over 50% experienced similar symptoms for at least a year without any diagnosis. This suggests undifferentiated disease is more common than current publications suggest.

IFAA plans to use the findings to encourage additional research as well as to establish a coalition to create unified symptom lists and to establish a program that will disseminate new disease detection models to primary doctors, hospitals, rheumatologists, and other specialists.

The full report can be downloaded at http://www.ifautoimmunearthritis.org/early-symptoms-of-autoimmune-arthritis-study.html. This project was made possible with funds provided by Janssen Pharmaceutical Companies, Inc.

Media contact:
Tiffany Westrich-Robertson
1-877-609-4226

SOURCE International Foundation for Autoimmune Arthritis

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