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

• Main Authors: Alexis Ogdie, W. Benjamin Nowell, Regan Reynolds, Kelly Gavigan, Shilpa Venkatachalam, Marie de la Cruz, Emuella Flood, Ethan J. Schwartz, Beverly Romero, Yujin Park
• Format: Article
• Language: English
• Published: Adis, Springer Healthcare 2019-04-01
• Series: Rheumatology and Therapy
• Subjects: Ankylosing spondylitis; Diagnosis; Misdiagnosis; Patient experience; Real-world study
• Online Access: http://link.springer.com/article/10.1007/s40744-019-0153-7

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.