PHILADELPHIA — August 1, 2019 — A new syndicated research study from Health Union finds that people with ankylosing spondylitis who consulted four or more healthcare professionals while seeking a diagnosis currently experience more difficult patient journeys, including a greater number of symptoms, less positive HCP relationships and a more negative quality of life. The survey, titled Ankylosing Spondylitis In America 2019, illuminates the perspectives and experiences of people living with ankylosing spondylitis. The findings also support the launch of AnkylosingSpondylitis.net, Health Union’s 22nd chronic condition-specific online community.

According to the Spondylitis Association of America, ankylosing spondylitis is a form of arthritis primarily affecting the spine that, due to inflammation of the spinal joints, can lead to severe, chronic pain. 

Unfortunately, receiving an ankylosing spondylitis diagnosis can often take a long time. The average time between symptom onset and diagnosis for survey respondents was 10.9 years, with 22% of respondents saying diagnosis took more than 20 years. One respondent described the diagnosis process as “isolating,” saying it “made me doubt myself and feel like a hypochondriac.”

Multiple factors contribute to the lengthy gap between symptoms onset and an ankylosing spondylitis diagnosis, including traditionally low condition awareness among some types of HCPs. As a result, patients typically consult multiple HCPs before receiving the correct diagnosis. About 43% of survey respondents saw three or less HCPs when seeking a diagnosis, while 57% saw at least four.

Survey findings suggest respondents who saw a greater number of HCPs before receiving an official diagnosis have had more difficult patient journeys. Unsurprisingly, those who saw four or more HCPs when seeking their diagnosis were more likely to be misdiagnosed at some point than those who saw three or less HCPs. Specifically, they were more likely to be misdiagnosed with spinal disc issues, fibromyalgia, depression, spinal stenosis and chronic fatigue syndrome.

Misdiagnoses and the long duration associated with consulting multiple doctors can often lead to symptoms worsening. Respondents who saw four or more HCPs when seeking a diagnosis were more likely to express anger about not finding out they had ankylosing spondylitis before symptoms worsened. This group of respondents was more likely over the previous month to experience a number of symptoms, including numbness or tingling, heel or foot pain, eye problems and bursitis.

Consulting a smaller number of HCPs before an official ankylosing spondylitis diagnosis also relates to stronger relationships with their current HCPs. Those who saw no more than three HCPs while seeking a diagnosis were more likely than those who saw at least four to say they were satisfied with their HCP care and received easy-to-understand test results from their HCP. They were also more likely to believe their HCPs clearly explain treatment options and understand their questions and concerns.

This can all significantly impact quality of life. Respondents who saw four or more HCPs when seeking a diagnosis were more likely than those who saw three or less to say they felt like a burden when discussing their symptoms with others and that their condition stops them from doing things people their age can do. Employment is impacted, as those who had seen a greater number of doctors were also more likely to have taken medical leave or voluntarily stopped working.

“Considering the arduous journey many people face before receiving an ankylosing spondylitis diagnosis, it’s important for them to have a community where they can engage with others who share their experiences,” said Tim Armand, co-founder and president of Health Union. “We aim to fill this need with AnkylosingSpondylitis.net, providing people with the information, support and validation they need as they live with a condition that is only starting to increase in awareness.”

Ankylosing Spondylitis In America 2019 surveyed 489 respondents living with ankylosing spondylitis from Feb. 26 to April 22, 2019. A summary infographic of the results is available on AnkylosingSpondylitis.net; additional survey results may be available upon request.

About Health Union

Health Union encourages social interactions that evolve into valuable online health conversations, helping people with chronic conditions find the information, connection, and validation they seek. The company creates condition-specific online communities – publishing original, daily content and continuously cultivating social conversation – to support, educate and connect millions of people with challenging, chronic health concerns. Today, the Health Union family of brands includes 23 online health communities, including LungCancer.net, ParkinsonsDisease.net, MultipleSclerosis.net and Type2Diabetes.com.