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 | Epidemiology | Family Medicine | Health Services Administration | Health Services Research | Musculoskeletal Diseases | Rheumatology
BACKGROUND: The average time to a diagnosis for people with axial spondyloarthritis (axSpA) is 7-10 years. Delayed diagnosis may result in increased structural damage, worse physical function, and worse quality of life relative to patients with a timely axSpA diagnosis. Understanding patient experiences may provide insights for how to reduce diagnostic delays.
OBJECTIVE: To provide foundational knowledge about patient experiences with healthcare providers leading to an axSpA diagnosis.
METHODS: We conducted an exploratory qualitative research study with six focus groups interviews with participants recruited from three rheumatology clinics within the United States (MA (n = 3); CO (n = 2); PA (n = 1)) that included a total of 26 adults (10 females, 16 males) with rheumatologist confirmed diagnosis of axSpA in 2019. Focus groups were ~ 2 h, audio recorded, transcribed, and subject to dual coding. The codes reviewed were in relation to the patients' diagnostic experiences.
RESULTS: Patients described frustrating and lengthy diagnostic journeys. They recognized that the causes of diagnostic delays in axSpA are multifactorial (e.g., no definitive diagnostic test, disease characteristics, lack of primary care provider's awareness about axSpA, trust). Patients described how doctors minimized or dismissed complaints about symptoms or told them that their issues were psychosomatic. Patients believed the healthcare system contributed to diagnostic delays (e.g., lack of time in clinical visits, difficulty accessing rheumatologists, health insurance challenges). Advice to physicians to reduce the diagnostic delay included allowing time for patients to give a complete picture of their illness experience, listening to, and believing patients, earlier referral to rheumatology, provision of HLA-B27 gene testing, and that physicians need to partner with their patients.
CONCLUSIONS: Patients desire a definitive test that could be administered earlier in the course of axSpA. Until such a test is available, patients want clinicians who listen to, believe, and partner with them, and who will follow them until a diagnosis is reached. Educating primary care clinicians about guidelines and referral for diagnosis of axSpA could reduce diagnostic delay.
Back pain, Delayed diagnosis, Focus groups, Mass screening, Patient preference, Qualitative research, Quality of life, Spondyloarthritis
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DOI of Published Version
Lapane KL, Dubé C, Ferrucci K, Khan S, Kuhn KA, Yi E, Kay J, Liu SH. Patient perspectives on health care provider practices leading to an axial spondyloarthritis diagnosis: an exploratory qualitative research study. BMC Fam Pract. 2021 Dec 20;22(1):251. doi: 10.1186/s12875-021-01599-2. PMID: 34930136; PMCID: PMC8691008. Link to article on publisher's site
BMC family practice
Lapane KL, Dube CE, Ferrucci KA, Khan SK, Kuhn KA, Yi E, Kay J, Liu S. (2021). Patient perspectives on health care provider practices leading to an axial spondyloarthritis diagnosis: an exploratory qualitative research study. Population and Quantitative Health Sciences Publications. https://doi.org/10.1186/s12875-021-01599-2. Retrieved from https://escholarship.umassmed.edu/qhs_pp/1465
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This work is licensed under a Creative Commons Attribution 4.0 License.