The ASCAM Study - December 2016

Lay Summary

Ankylosing spondylitis (AS) is a chronic inflammatory disease affecting the back, causing ongoing pain and stiffness in individuals affected by this condition. People with symptoms of AS may experience symptoms for five years or longer before they receive a diagnosis. It is thought this is due to the difficulties that clinicians have in recognising the difference between AS symptoms and other types of back pain. 

Research has found that people with AS feel they have to fight for a diagnosis and to be believed about their symptoms. For this reason, they may be accessing complementary and alternative therapies (CAM) as a way to help them to manage their symptoms. In line with this, it has been found that approximately 40% of people with AS used one or more form of CAM before receiving their diagnosis. 

To explore CAM use prior to and after diagnosis of AS and the experiences CAM practitioners have of treating people with (possible) AS, we conducted interviews and surveys with individuals with AS (8 interviews, 30 survey responses) and CAM practitioners (8 interviews, 52 survey responses). 

Understanding patterns of CAM use prior to diagnosis may help identify opportunities to reduce delays in diagnosis through CAM settings.