Many Ankylosing Spondylitis Patients Face Diagnosis Challenges

Ankylosing spondylitis (AS) patients frequently encounter delayed diagnoses as well as misdiagnoses, researchers recently found—and women may be more adversely affected than men.

“Ankylosing spondylitis (AS) is a debilitating disease with a negative impact on patients’ quality of life (QOL),” said study author W. Benjamin Nowell, Ph.D., Director of Patient-Centered Research at CreakyJoints and co-principle investigator of ArthritisPower, in an interview with DocWire News. “There are no definitive clinical tests or biomarkers that point to AS. In addition, symptoms—ranging from back pain to general fatigue and malaise—often present in teenagers or younger adults who may not realize they could be attributable to AS and require treatment from a rheumatologist.”

These factors all contribute to the difficulty in diagnosing AS, which prompted the researchers to undertake the study. To do so, they used CreakyJoints, ArthritisPower, and social media to recruit self-reported AS patients aged ≥ 18 years. Patients self-reported sociodemographic and treatment characteristics, and clinical characteristics; they also provided details on their diagnosis history, including how long patients waited from initially seeking healthcare until they received an AS diagnosis. Responses were stratified by patient sex and how long patients waited between seeking healthcare and receiving their AS diagnosis: ≤ 1 year, 2–9 years, and ≥ 10 years.

Patient Characteristics, Diagnosis Difficulties

The final analysis included responses from 235 patients, who were 74% female and had a mean age of 49.8 years. Male patients had an older mean age than females (53.1 vs. 48.6). The majority (92.8%) of patients were white.

Close to half (48.9%) of patients had an advanced degree, and a similar proportion (n = 110, 46.8%) were employed either full- or part-time, while 26 (11.1%) were retired. Just over one-third (n = 89, 37.9%) of patients were disabled.

When asked how long they waited from seeking medical attention to receiving a diagnosis, 37% (n = 87) waited ≤ 1 year, 30.2% (n = 71) waited 2–9 years, and 32.8% (n = 77) waited ≥ 10 years. There was an insignificant trend among patients who waited a decade or longer for a diagnosis to be white and older, Additionally, female patients waited longer to receive a diagnosis than males. When assessing outcomes by sex, women were more likely to report fatigue, back pain, difficulty sleeping, anxiety, migraine, tendon or ligament pain, foot problems, fibromyalgia, and irritable bowel syndrome than men, who were more likely to report hypertension than women.

“The key takeaway of this study is that the impact of AS increases as the journey towards diagnosis becomes prolonged. Delayed diagnosis and later subsequent treatment lead to a poor quality of life and overall frustration by patients at their health care providers who cannot help them to find relief,” said Dr. Nowell.

Study author Alexis Ogdie, MD, MSCE, Assistant Professor of Medicine at the Hospital of the University of Pennsylvania, Assistant Professor of Epidemiology in Biostatistics and Epidemiology and Medical Advisor to CreakyJoints, said the sex-based differences came as a surprise.

“Clearly we need a better understanding of how the disease manifests and affects men and women differently,” she said. However, the greatest challenges faced by providers when screening possible AS patients applies to both sexes: the lack of tools.

“We don’t have great screening tools—this is an active area of investigation,” she said. “Additionally, we need to get patients in earlier.”

Dr. Nowell also emphasized the importance of timing.

“If a patient suspects they have AS, the first step is to get evaluated by a rheumatologist right away,” he said “When making the appointment, it’s important to specify inflammatory back pain since rheumatology clinics don’t treat patients with stress- or injury-related lower back pain.”