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A mixed methods study to uncover impediments to accurate diagnosis of nonradiographic axial spondyloarthritis in the USA

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Abstract

Introduction/objectives

Delayed diagnosis of axial spondyloarthritis (axSpA) is well documented; little is known about the diagnostic journey and impediments for US patients with nonradiographic axSpA (nr-axSpA). It is hypothesized that impediments are varied and exist at both the healthcare provider (HCP) and patient levels. This study aims to understand patient experiences and contributors to delayed nr-axSpA diagnosis in the USA.

Method

Interviews of adults with rheumatologist-diagnosed nr-axSpA, recruited through Spondylitis Association of America outreach and patient panels, and of rheumatologists, explored the diagnostic journey and diagnostic barriers. Emerging themes were further explored in an online patient survey. A multiple logistic regression analysis evaluated the main outcome variable, factors affecting time to nr-axSpA diagnosis.

Results

Interviews were conducted with 25 patients and 16 rheumatologists. Survey responses from 186 eligible patients revealed median time from symptom onset to diagnosis of nr-axSpA was 3.25 years. Delayed diagnosis was significantly more likely for women and people in rural areas. Most patients consulted ≥4 different types of HCPs before a rheumatologist and ≥2 rheumatologists before diagnosis. Impediments to timely diagnosis included insidious chronic pain; episodic symptom patterns attributed to activity; symptoms other than chronic lumbosacral back pain requiring medical consultation; and unfamiliarity with and misperceptions about nr-axSpA among HCPs, radiologists, and rheumatologists.

Conclusions

Delayed nr-axSpA diagnosis is common and reflects HCP knowledge gaps and frequent patient presentation with dominant nonaxial symptoms. Targeted HCP education, research into early disease patterns, and interventions sensitive to the broader spectrum of nr-axSpA manifestations are needed to improve timely diagnosis.

Key Points

• Patients with nr-axSpA often see multiple types of HCPs, and multiple rheumatologists, before receiving a diagnosis.

• Both patients and HCPs are unfamiliar with nr-axSpA and its symptoms, lacking understanding that nr-axSpA can occur in young people, females, and those presenting with normal x-rays.

• Disease recognition by nonrheumatology HCPs is key for early referral.

• Education on cardinal features, epidemiology, burden, and benefits of timely nr-axSpA diagnosis is warranted for HCPs who commonly manage back pain.

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Data availability

The datasets used and analyzed during the current study are available from the corresponding author on reasonable request.

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Acknowledgements

The authors would like to thank Dr Jill Foster and the Institute for Medical and Nursing Education editorial team for support in developing this manuscript. We would also like to acknowledge Erin Schulz, John Thomas, and the LaunchBox team for their help in conducting and analyzing interviews and the survey and in reporting initial findings.

Funding

UCB provided funding to the Spondylitis Association of America in support of this study.

Author information

Authors and Affiliations

  1. The Vancouver Clinic, Washington State University, 700 NE 87th Avenue, Suite 330, Vancouver, WA, 98664, USA

    Sonam Kiwalkar

  2. Spondylitis Association of America, 16430 Ventura Blvd, Suite 300, Encino, CA, 91436, USA

    Richard Howard

  3. Oregon Health & Science University-Portland State University School of Public Health, Oregon Health & Science University, 1810 SW 5th Ave. Suite 510, Portland, OR, 97201, USA

    Dongseok Choi

  4. Division of Arthritis and Rheumatic Diseases, Oregon Health & Science University, 3270 SW Pavilion Loop, Portland, OR, 97239, USA

    Atul Deodhar

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Contributions

SK was integral in developing the study design, analyzing and interpreting the study datasets, and liaison with the statistician on dataset analysis. RH was integral in developing the study design, recruitment and enrollment of patients into the study, and analyzing and interpreting study datasets. DC provided statistical analysis on all datasets and verified data accuracy. AD was integral in development of the study design and analyzing and interpreting study datasets. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Sonam Kiwalkar.

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Consent for publication

All study participants provided their consent for participation. Consent forms are available upon request.

Competing interests

SK declares that she has no competing interests. RH declares that he has the following competing interests: Consulting/advisory board: Novartis, GSK; Stock: AbbVie, Amgen, Bristol Myers Squibb, GSK, Johnson & Johnson, Lilly, Merck, Novartis, Pfizer, Teva, UCB, Viatris. DC declares that he has no competing interests. AD declares that he has the following competing interests: Consulting/advisory boards: AbbVie, Amgen, Boehringer Ingelheim, Bristol Myers Squibb, Celgene, GSK, Eli Lilly, Janssen, Novartis, Pfizer, UCB; Research grants: AbbVie, Lilly, Novartis, Pfizer, UCB.

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UCB did not participate in the survey design, interpretation of results, or manuscript development.

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The authors acknowledge an overlap with a previously published article by the same authors: https://www.researchsquare.com/article/rs-876767/v1.

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Kiwalkar, S., Howard, R., Choi, D. et al. A mixed methods study to uncover impediments to accurate diagnosis of nonradiographic axial spondyloarthritis in the USA. Clin Rheumatol 42, 2811–2822 (2023). https://doi.org/10.1007/s10067-023-06671-z

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