Real-World Patient Experience on the Path to Diagnosis of Ankylosing Spondylitis

Abstract

Introduction We describe the journey to diagnosis of ankylosing spondylitis (AS) from the patient perspective and examine differences in this journey by sex. Methods US adults aged ≥ 18 years with a self-reported AS diagnosis were recruited online through CreakyJoints, a patient support community, and ArthritisPower, a patient research registry. Respondents completed a web-based survey on sociodemographics, disease burden, and diagnosis history. Results were stratified by sex and time to diagnosis using two-sample t tests and χ 2 tests, respectively, to observe differences across the groups; P < 0.05 was considered statistically significant. Results Among 235 respondents, 174 (74.0%) were female. Mean (SD) ages of female and male respondents were 48.6 (10.6) and 53.1 (10.3) years, respectively. From the time respondents began seeking medical attention, 87 were diagnosed within ≤ 1 year, 71 in 2–9 years, and 77 after ≥ 10 years. Symptoms that led respondents to seek treatment were back pain (73.2%) and joint pain (63.8%); fatigue and difficulty sleeping were more common among respondents with longer times to diagnosis. During the diagnosis process, men with AS tended to receive quicker AS diagnosis compared with women. Overall, commonly reported initial diagnoses among respondents with longer time to AS diagnosis included back problems and psychosomatic disorders. Significantly more women reported misdiagnoses of fibromyalgia (20.7 vs. 6.6%) and psychosomatic disorders (40.8 vs. 23.0%) compared with men. Conclusions Diagnosis delays and misdiagnoses were common among respondents with AS. Increasing awareness about AS among referring providers may minimize diagnosis delay. Funding Novartis Pharmaceuticals Corporation. Plain Language Summary Plain language summary available for this article. Electronic Supplementary Material The online version of this article (10.1007/s40744-019-0153-7) contains supplementary material, which is available to authorized users.

Axial spondyloarthritis 10 years on: still looking for the lost tribe

“…Increased delay to diagnosis has been associated with worse outcomes in axSpA; a recent systematic review found that individuals with a delayed diagnosis had higher disease activity, worse physical function, increased structural damage, greater likelihood of work disability, and higher direct and indirect healthcare costs than those who received earlier diagnosis [ 13 ]. Delayed diagnosis is associated with an increased likelihood for worse quality of life and negative psychological consequences [ 13 ], in addition to worse treatment outcomes [ 22 , 23 ], fatigue, difficulty sleeping and prevalence of psychosomatic disorders [ 24 ]. Several factors are independently associated with a long diagnostic delay: including female sex, HLA-B27 negativity, presence of psoriasis and young age of symptom onset [ 25 ].…”

“…Several factors are independently associated with a long diagnostic delay: including female sex, HLA-B27 negativity, presence of psoriasis and young age of symptom onset [ 25 ]. Previous misdiagnosis of FM and psychosomatic disorders is suggested to be higher in women compared with men (20.7 vs 6.6% and 40.8 vs 23.0%, respectively) [ 24 ]. Presence of peripheral arthritis and IBD have been associated with earlier diagnosis [ 26–28 ]—earlier diagnosis and treatment leading to better outcomes and treatment responses [ 22 , 23 ].…”

Patient perspectives on the pathway to psoriatic arthritis diagnosis: results from a web-based survey of patients in the United States

“…Survey participants in the United States aged ≥18 years with a self-reported diagnosis of PsA were recruited for our study via CreakyJoints (https://creakyjoints.org), ArthritisPower (https://arthritispower.creakyjoints.org), and social media outreach in a process similar to a previously reported survey of patients with ankylosing spondylitis [19]. The Global Healthy Living Foundation (GHLF) is the umbrella organization of both CreakyJoints and ArthritisPower, and GHLF investigators identified eligible members based on profile information, which was voluntarily provided, including age, sex, location via zip code, condition, and current medical prescription; no personal information was stored.…”

Application of machine learning in the diagnosis of axial spondyloarthritis

“…The estimated delay between symptom onset and diagnosis of ankylosing spondylitis in the United States is approximately 13 years [24]. This delay in diagnosis contributes to the significant burden on patients, caregivers, and society [25–30]. Reasons for delayed diagnosis are intrinsic to the disease and systemic to the healthcare system.…”

“…Reasons for delayed diagnosis are intrinsic to the disease and systemic to the healthcare system. Intrinsic features of the disease such as the common presentation of low back pain [29], lack of awareness of differential disease presentations among men and women [31–34], insidious onset, slow progression, lack of specific biomarkers [21,35,36], absence of remarkable physical findings among patients with early stages of axSpA and ankylosing spondylitis [37], and lack of extra-articular manifestations [37] contribute to misdiagnosis [25] and complicate early identification and diagnosis. The lack of accessibility to rheumatologists and long waiting times are also barriers to a timely diagnosis [38,39].…”