Division of Epidemiology, Department of Population and Quantitative Health Sciences; Clinical and Population Health Research Program, Graduate School of Biomedical Sciences; Division of Rheumatology, Department of Medicine
Diagnosis | Health Services Administration | Musculoskeletal Diseases | Rheumatology
INTRODUCTION: On average, patients with axial spondyloarthritis (axSpA) suffer from symptoms up to 13 or more years before diagnosis, contributing to psychological distress and healthcare burden
METHODS: We conducted six semi-structured focus groups with 26 axSpA patients (from 3 rheumatology practices located in the states of Massachusetts, Colorado, and Pensylvania, USA) exploring early disease and diagnostic experiences. Verbatim transcripts were coded using a start list with emerging thematic codes added. A qualitative thematic analysis was performed
RESULTS: Many participants described meandering and frustrating diagnostic journeys. Participants reported that intermittent axSpA symptoms and idiopathic pain contributed to physician confusion and delay in patients seeking care. Participants were sometimes perceived as somaticizing, drug-seeking, or "crazy." Diagnostic delay led to frustration and mental suffering. Doctors "giving up" was considered profoundly negative. Stories of symptoms fell into five areas: (1) pain; (2) stiffness; (3) impact on sleep; (4) impact on daily activities; and (5) changes with weather. Self-advocacy and family advocacy were considered essential. Participants suggested wider use of HLA-B27 testing and development of a definitive diagnostic test
CONCLUSION: Most participants described significant suffering prior to axSpA diagnosis which could have been avoided with earlier intervention. Further research on the early disease experiences of axSpA patients is needed.
AxSpA, Axial spondyloarthritis, Clinical inertia, Diagnostic delay, Symptoms of unknown origin
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DOI of Published Version
Dube CE, Lapane KL, Ferrucci KA, Beccia AL, Khan SK, Yi E, Kay J, Kuhn KA, Ogdie A, Liu SH. Personal Experiences with Diagnostic Delay Among Axial Spondyloarthritis Patients: A Qualitative Study. Rheumatol Ther. 2021 Jun;8(2):1015-1030. doi: 10.1007/s40744-021-00321-z. Epub 2021 May 31. PMID: 34059989; PMCID: PMC8217406. Link to article on publisher's site
Rheumatology and therapy
Dube CE, Lapane KL, Ferrucci KA, Beccia AL, Khan SK, Yi E, Kay J, Kuhn KA, Ogdie A, Liu S. (2021). Personal Experiences with Diagnostic Delay Among Axial Spondyloarthritis Patients: A Qualitative Study. Open Access Publications by UMMS Authors. https://doi.org/10.1007/s40744-021-00321-z. Retrieved from https://escholarship.umassmed.edu/oapubs/4762
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This work is licensed under a Creative Commons Attribution-Noncommercial 4.0 License