AB0788 The International Map of Axial Spondyloarthritis (IMAS): a US patient perspective on diagnosis and burden of disease

Abstract

BackgroundAxial spondyloarthritis (axSpA) is a chronic inflammatory disease encompassing radiographic (traditionally known as ankylosing spondylitis) and non-radiographic forms that lead to chronic pain, structural damage, and disability.1 The International Map of Axial Spondyloarthritis (IMAS) survey is an initiative developed to generate insights into the real-life experiences of people living with axSpA to ultimately improve quality of life.2ObjectivesTo assess the burden and daily experience of patients with axSpA in the United States.MethodsThe IMAS survey generates a report on patient-reported aspects of disease burden and experience with axSpA using adaptations of the original Atlas of axSpA questionnaire developed in collaboration with patients, the Axial Spondyloarthritis International Federation, and clinical academic experts. In this US adaptation of the IMAS survey, a 30-minute quantitative online survey was administered to US patients aged ≥18 years who completed screening questions, self-reported having been diagnosed with axSpA by a healthcare provider, and were under the care of a healthcare provider between July 22, 2021, and November 10, 2021. Survey questions were tailored to reflect differences in the US healthcare systems and the availability of treatments. This analysis presents a portion of the US data describing patient demographics, clinical characteristics, journey to axSpA diagnosis, and the emotional impact and overall burden of disease on quality of life using the General Health Questionnaire 12 (GHQ-12), the Assessment of SpondyloArthritis international Society – Health Index (ASAS-HI), and a global limitation index of 18 activities of daily living. All results were reported descriptively using summary statistics.ResultsSurvey data from 228 US patients with axSpA were collected in this analysis. The mean age was 45 years, 60% of patients were female, and the mean BMI was 27.7 kg/m2 (Table 1). Participating patients had an average of 5.6 comorbidities, with anxiety (43%), depression (41%), and hypertension (32%) as the most commonly reported comorbidities. Among all patients, the mean age at onset of first symptoms was 26 years and the mean age at diagnosis was 35 years; overall, mean diagnostic delay was greater in female than in male patients (11.2 vs 5.2 years; Figure 1A). According to the validated GHQ-12, over half of the patients (57%) were at risk for psychological distress (GHQ-12 score ≥3; Figure 1B). Patients who were older (>40 years old), physically inactive, or who had active disease (BASDAI ≥4) were at risk for psychological distress. Most patients (82%) suffered from a high degree of impairment (ASAS-HI ≥6), 47% had a medium or high limitation in activities of daily living, and 46% of patients were not employed at the time of the survey.Table 1.Patient Demographic and Clinical CharacteristicsCharacteristicPatients with axSpA(N=228)Mean age, years45Female, %60White, %86Mean body mass index, kg/m227.7Nonsmoker, %62Alcohol consumption behavior, %Never19Every day9Mean number of comorbidities5.6Common comorbidities (≥20% of patients), %aAnxiety43Depression41Hypertension32Obesity/overweight31Sleep disorders30Hypercholesterolemia29Uveitis24Psoriatic arthritis23Fibromyalgia20Spinal or other fractures20Psoriasis20Employed, %54axSpA, axial spondyloarthritis.aRespondents could have selected ≥1 answer.ConclusionThis study showed that a high proportion of US patients with axSpA report impaired function and are at risk for psychological distress. Patients also experienced a substantial delay in the time to axSpA diagnosis, with longer delays than those reported in the European Union. Delays were twice as long in women compared to men. These findings highlight the large impact of disease on daily activities and mental distress in US patients with axSpA.