It's an unfortunate truth that the diagnosis of spondyloarthritis & ankylosing spondylitis is terribly delayed, usually for many years.
Part of this is the fact that the symptoms and signs a patient presents with can be non-specific, and it can be hard to distinguish inflammatory spinal pain from mechanical spinal pain.
Part of this is the fact that treating health professionals have poor knowledge & awareness of this condition (read if you don't know what to look for, how are you going to treat it).
I can understand why patients who suffer from these diseases can be terribly frustrated.
Delayed diagnosis = Poor treatment options = Wasted Opportunity/Time/Resources = Suffering
I thought I'd share some Australian statistics. Dr Lionel Schachna's group from Melbourne, Australia presented this work at the 2011 Chicago ACR meeting.
A self-administered questionnaire was completed by 127 of 219 patients attending an Ankylosing Spondylitis referral centre, patients who were treated with a tumor necrosis factor (TNF) inhibitor.
The mean age when these patients started to have symptoms was 23.9. The mean delay to diagnosis was unfortunately 10 years.
Patients played a part in this delay. Over one-third did not consult a health care professional for more than 12 months after the start of symptoms, with 71% assuming that the symptoms would just go away.
The diagnosis of Ankylosing Spondylitis was established by a rheumatologist in 68%, a family physician in 18%, and an orthopaedic surgeon in 5.5%.
Working in a multidisciplinary arthritis centre like BJC Health, I was very interested to learn that prior to diagnosis, 68% consulted a physiotherapist and 16% consulted 3 or more physiotherapists!
44% went to see a chiropractor and 9% saw 3 or more chiropractors. 27% chose to see an osteopath with 3% seeing 3 or more osteopaths.
The diagnosis of spondyloarthritis was, sadly, suspected by an allied health professional in only 2 of these patients (1.7%)!
I'm sure our BJC Health physiotherapists would do better given their specific training. These sort of statistics really suggest that our efforts to better educate physiotherapists about rheumatic conditions need to continue.
On a more positive note, establishing the diagnosis led to emotional relief for 69%, a positive shift in how symptoms were perceived by 76%, and a more optimistic outlook was reported by 66%.
What's your experience with a delay in diagnosis?
BJC Health established the Sydney Spondyloarthritis Centre in 2011. We raise the profile of these diseases, we provide a better pathway to diagnosis, provide education as well as world-class treatment. Most importantly, we care & we want to improve the lives of people suffering from these diseases. Read about it here.Dr Irwin Lim is a rheumatologist and a director of BJC Health. You should follow him on twitter here.Arthritis requires an integrated approach. We call this, Connected Care. Contact us.