Researcher(s)
- Matt Librizzi, Exercise Science, University of Delaware
Faculty Mentor(s)
- Daniel White, Physical Therapy, University of Delaware
Abstract
Introduction: Rheumatic conditions are a leading cause of pain and disability among adults. Clinical studies used to study these conditions typically rely on physicians to verify diagnosis. However, it is unclear if the patient’s recall of his/her diagnosis is accurate. Historically, it is believed that patient recall is inaccurate, however this has not been formally studied. This study aims to assess the agreement of patient recalled and physician reported diagnosis in an online cohort of adults with rheumatic conditions in the United States.
Methods: Participants were recruited online using Meta advertisements, the Arthritis Foundation, and ResearchMatch. Those who were ≥ 18 years old, lived in the US, and have been diagnosed with a rheumatic condition were included. Participants self-reported rheumatic conditions with options of Osteoarthritis, Fibromyalgia, Rheumatoid Arthritis, Psoriatic Arthritis, Gout, Lupus, and/or Other. Physician diagnoses were established by participant provided medical records or physician confirmation. Agreement was assessed using percent agreement and kappa coefficient (0.21-0.40 fair, 0.41-0.60 moderate, 0.61-0.80 substantial, 0.81-0.99 near perfect, and 1.0 perfect agreement) for each diagnosis.
Results: 141 participants (mean age = 57.9 years, 84.3% female, mean BMI =34.3 kg/m2,) were included in the analysis. Percent agreement between physician diagnoses and patient-reports ranged from 88.7% to 98.6% with kappa coefficient ranging from 0.39 to 0.91. Psoriatic arthritis had the highest percent agreement (98.6%) and kappa coefficient (0.91). Osteoarthritis had the lowest percent agreement (88.7%) and “Other” had the lowest kappa coefficient (0.39). Examples of reported “Other” diagnoses include ankylosing spondylitis, Sjogren’s arthritis, or scleroderma.
Conclusion: Patient-recalled diagnoses of specific rheumatic conditions demonstrated high agreement with physician diagnoses, whereas “Other” conditions not directly listed had fair agreement. Our findings suggest that patients accurately recall their rheumatic diagnoses which goes against the common perception that patients do not know their disease diagnosis.