AB0892-HPR PATIENT PERSPECTIVES ON PROVIDER PRACTICES LEADING TO AN AXIAL SPONDYLOARTHRITIS DIAGNOSIS: A QUALITATIVE STUDY
Authors: Lapane K. , Dubé C. , Ferrucci K. , Khan S. , Kuhn K. A. , Ogdie A. , Yi E. , Kay J. , Liu S. H. 
Published: May 2021

Background:

People with Axial Spondyloarthritis (axSpA) experience a diagnostic delay between 7 to 10 years. (1-5) This delay contributes to increased depression and desperation in searching for an appropriate diagnosis. (6) Consequently, people with axSpA experience impaired physical function, structural damage, and overall worsened quality of life than those who experience a timely diagnosis. (7)

Objectives:

To gain knowledge and understand patients’ experiences with healthcare providers in diagnosis of axSpA.

Methods:

Using qualitative study design, we conducted six focus groups, with a total of 26 participants with a confirmed diagnosis of axSpA by rheumatologists from three different geographic locations: Worcester, MA, Aurora, CO and Philadelphia, PA. Focus groups were audio recorded and approximately 2 hours in duration. The focus groups were transcribed, deidentified, cleaned and stored in a secure location. NVivo software was used to code the data using a coding scheme which emerged from the focus group discussion topics. For intercoder reliability, two researchers coded the data and generated summary reports for data analysis.

Results:

Patients described their frustrating journeys to diagnosis and attributed the lengthy diagnosis delays to a multitude of factors. These elements include, lack of definitive diagnostic test, disease characteristics, lack of primary care providers’ awareness of axSpA, time, and trust. Patients felt that their physicians dismissed their complaints or would describe their symptoms as psychosomatic. The health care system also contributed to their diagnostic delays, including the lengthy referral process to a rheumatologist and the short clinical appointments. Patients believe that to reduce diagnostic delay, physicians must work with their patients; listening and believing their patients while allotting time for patients to discuss their experiences. In addition, patients believe earlier referral to a rheumatologist, and HLA-B27 genetic testing would decrease the diagnostic delay of axSpA.

Conclusion:

In this study, patients desire definitive testing in clinical practice for earlier diagnosis of axSpA. Additionally, more education regarding the guidelines to diagnose axSpA and earlier referral to rheumatologists might be needed. Until this is feasible, patients seek clinicians who will work with them until a diagnosis is made, listening, and believing their experiences and symptoms.

References:

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[2]Deodhar A, Mease PJ, Reveille JD, et al. Frequency of Axial Spondyloarthritis Diagnosis Among Patients Seen by US Rheumatologists for Evaluation of Chronic Back Pain. Arthritis Rheumatol. 2016;68(2326-5205 (Electronic)):1669–1676.

[3]Garrido-Cumbrera M, Poddubnyy D, Gossec L, et al. The European Map of Axial Spondyloarthritis: Capturing the Patient Perspective-an Analysis of 2846 Patients Across 13 Countries. Curr Rheumatol Rep. 2019;21(1534-6307 (Electronic)):19.

[4]Redeker I, Callhoff J, Hoffmann F, et al. Determinants of diagnostic delay in axial spondyloarthritis: an analysis based on linked claims and patient-reported survey data. Rheumatology (Oxford) 2019;58(1462-0332 (Electronic)):1634–1638.

[5]Strand V, Singh JA. Evaluation and Management of the Patient With Suspected Inflammatory Spine Disease. Mayo Clin Proc 2017;92(1942-5546 (Electronic)):555–564.

[6]Martindale J. The impact of delay in diagnosing ankylosing spondylitis/axial SpA. . Rheumatology. 2014;53.

[7]Yi EA-O, Ahuja A, Rajput T, George AT, Park Y. Clinical, Economic, and Humanistic Burden Associated With Delayed Diagnosis of Axial Spondyloarthritis: A Systematic Review. Rheumatol Ther 2020(2198-6576 (Print)):65-87.

Disclosure of Interests:

Kate Lapane: None declared, Catherine Dubé Grant/research support from: Novartis, as personnel on such studies, Katarina Ferrucci: None declared, Sara Khan: None declared, Kristine A. Kuhn Consultant of: UCB, Eli Lilly, Novartis, Grant/research support from: Pfizer, Alexis Ogdie Consultant of: Abbvie, Amgen, BMS, Celgene, Corrona, Gilead, Janssen, Lilly, Novartis, Pfizer, UCB, Grant/research support from: Pfizer to Penn, Novartis to Penn, Amgen to Forward/NDB, Esther Yi Employee of: Novartis Pharmaceuticals, Jonathan Kay Consultant of: AbbVie, Inc.; Boehringer Ingelheim GmbH; Celltrion Healthcare Co. Ltd.; Jubilant Radiopharma; Merck & Co.,Inc.; Pfizer Inc.; Samsung Bioepis; Sandoz Inc.; Scipher Medicine; UCB, Inc., Grant/research support from: (paid to UMass Medical School) Gilead Sciences Inc.; Novartis Pharmaceuticals Corp.; Pfizer Inc., Shao-Hsien Liu Grant/research support from: Novartis