A recent study published in ACR Open Rheumatology provided insight into the self-reported experiences of people living with axial spondyloarthritis (axSpA). The study explored the physical, emotional, and psychological effects of axSpA on quality of life.
Researchers used a US version of the International Map of Axial Spondyloarthritis (IMAS) survey to collect data on the impact of axSpA in terms of financial cost, mortality, morbidity, and other indicators related to daily living. Two-hundred-twenty-eight people with axSpA, recruited through collaboration with the Spondylitis Association of America, participated in the study.
Most respondents (84.6%) reported back pain as the axSpA-related symptom that initiated their visit to a health care provider, followed by stiffness and joint pain. Overall, women were more likely to report fatigue or exhaustion as the symptom that caused them to seek care. Most participants were seen by three specialists prior to receiving their axSpA diagnosis, and 64.5% reported being misdiagnosed. Women experienced longer delays in diagnosis, taking an average of 11 years to be diagnosed. Men, on the other hand, experienced an average diagnosis delay of 5 years.
Those who were routinely physically active were less likely to have moderate or high disease activity compared with those who were not physically active. In addition, people who were physically active were less likely to report psychological distress compared with those who were not physically active.
Comorbid diseases, or co-existing diseases, were reported by more than one half of survey participants, and the most common were anxiety and depression, as well as psoriatic arthritis and fibromyalgia. People with high disease activity and psychological distress reported more comorbid disorders or diseases than those without.
All surveyed individuals reported that axSpA pain sometimes disrupted normal activities, such as falling and/or staying asleep, running, and standing. Many respondents struggled to keep social commitments and noted that the disease challenged their relationships with family, friends, and partners. Respondents also noted that the disease caused job-related issues as they missed work for doctor appointments, struggled with sitting or standing for long hours, and took frequent sick leave.
Though the authors of the study highlight some of its limitations, such as small sample size and the potential unreliability of patient recall, they note that the study supports other research on axSpA. The study also reinforces the usefulness of tools like IMAS that rely upon patient-reported outcomes (PROs). PROs are useful in assessing the impact of disease on patients’ daily lives but are infrequently used in routine clinical practices. Understanding the patient experience with axSpA may provide valuable insights and address knowledge gaps in patient care.
- The International Map of Axial Spondyloarthritis Survey: A US Patient Perspective on Diagnosis and Burden of Disease (wiley.com)
- Physical Activity Shown to Improve Overall Functioning in Axial Spondyloarthritis
- Work-Related Issues and a High Burden of Disease Are Frequent in Axial Spondyloarthritis: What Should We Be Doing Better?
Spondylitis Association of America