We started the Sydney Spondyloarthritis Centre at the end of 2011. Sydney didn't have any specific unit providing a comprehensive approach to patients with these intriguing rheumatic diseases and it was time it did.
For us health professionals working together, it's an exciting time in the field with many advances in understanding. This has stimulated thinking about faster diagnosis, about how we monitor and manage patients with the diseases better, and it has fostered new treatment development.
I'm reviewing the progress of our service for a talk this weekend.
From January 2012 to April 2013,
- 130 patients received assessment and treatment
- 92 of these have the diagnosis of Ankylosing Spondylitis
- 38 have spondyloarthritis, without X-ray evidence of sacroiliitis
- 56 of the 92 patients with Ankylosing Spondylitis are on TNF inhibitor therapy
The included patients have been reviewed by a rheumatologist. After this, they are referred to our specific Ankylosing Spondylitis (AS)/ Spondyloarthritis (SpA) physiotherapists, Rachael Butterworth and Jean Redmond.
Rach and Jean then have a lot to get through with the patient, including:
- Furthering education
- Metrology (documentation of mobility & disease activity with a bunch of developed measurement indices) including BASDAI, BASMI, BASFI, chest expansion, enthesitis score, & ASDAS (see ASAS site for more details on these)
- Developing (and/or improving) a regular exercise program
- Working out specific physiotherapy treatments & exercises to target problems identified in their assessments
The plan is to follow up and monitor the effects of our treatments, both medication and non-medication.
As the AS/SpA patients improve, their treatment has also transitioned to our exercise physiology team, with the aim of gradually stepping up their exercise programs. Regular activity remains an extremely important component of AS/SpA management and we hope to create lasting lifestyle change.
In the last month, Flora, our rheumatology care coordinator, has been involved. Patients getting the initial diagnosis then see Flora for further education and Flora's role is to be there for the patient. Helping guide them through any difficulties they may have as they negotiate living with the disease and as they negotiate a complicated health system.
I thought it worth updating you. Our Sydney Spondyloarthritis Centre is a work in progress.
I know there are some great Ankylosing Spondylitis/ Spondyloarthritis centres in existence in the public hospital sphere (eg Royal National Hospital for Rheumatic Diseases, Bath & at the Diamantina Institute, Brisbane), but I'm not aware of similar set-ups in a private practice setting.