Patient perspectives on health care provider practices leading to an axial spondyloarthritis diagnosis: an exploratory qualitative research study

Abstract

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.

Experiences of Patients Living with Retrograde Cricopharyngeal Dysfunction

“…Participants in this study emphasized a desire to increase public awareness about the existence of RCPD and wanted physicians to appreciate how significantly RCPD impacts quality of life. Patient invalidation by the medical community represents a significant barrier to diagnosis and obtaining patient trust as demonstrated in other at‐risk populations, including patients with chronic pain, fibromyalgia, and patients who identify as sexual and gender minorities 21,23,24 . A feature of this study is that a lack of diagnosis in participants interviewed resulted in potentially harmful or maladaptive behaviors to alleviate their RCPD symptoms.…”

“…Patient invalidation by the medical community represents a significant barrier to diagnosis and obtaining patient trust as demonstrated in other at-risk populations, including patients with chronic pain, fibromyalgia, and patients who identify as sexual and gender minorities. 21,23,24 A feature of this study is that a lack of diagnosis in participants interviewed resulted in potentially harmful or maladaptive behaviors to alleviate their RCPD symptoms. The impact of self-treatment is amplified as there is a risk of self-misdiagnosis when there is no connection to a physician to guide management.…”

Performance of Fully Automated Algorithm Detecting Bone Marrow Edema in Sacroiliac Joints

“…Early diagnosis of axSpA is crucial to treatment results and the future quality of life of affected patients [17]. However, there is often perennial delay between the onset of symptoms and diagnosis [18,19].…”

COVID-19 Disrupts Rheumatology Care: An Opportunity for Innovation?

“…4,5 Although it remains a responsibility of rheumatologists to ensure timely first visits are offered to people with suspected IRD, delays in accessing primary care, lack of recognition of features of IRD, and referral delays are significant contributors to definitive diagnosis and management. [5][6][7] An ongoing focus for research and clinical practice is how to expand the evidence base regarding effective strategies to facilitate movement through these steps.…”