1. Musculoskeletal Research Collaboration Epidemiology Group, Institute of Applied Health Sciences An Update of AS Research Dr Gareth Jones Senior Lecturer in Epidemiology

2. 1495 –UK’s 5 th oldest university –1 st Professor of Medicine 1498 –Shore Porters Society – world’s oldest recorded transport company Today –Largest medical campus –Highest concentration of health and life scientists in Europe

3. Winter Summer

4. Epidemiology Group Epidemiology –Disease in the population –How common is it? –What causes it? –How best should we treat it? Three programmes –Rheumatic and musculoskeletal disease –Reproductive health –Ageing Musculoskeletal pain / fibromyalgia Rheumatic fatigue Physical activity Spondyloarthritis

5. Studies in Spondyloarthritis All patients in Scotland Clinical diagnosis of ankylosing spondylitis Clinical data Questionnaire data –Baseline, 1yr, 2yr Sample of patients across UK Two groups –Starting biologic therapy –Never received biologic therapy Similar data collection

6. Overview Prevalence Quality of life Employment –Work impairment Future directions –Flares

7. PREVALENCE

8. Prevalence (Rheumatology) 1686 patients –Aged ≥16yrs –12 Health Boards Prevalence –47 per 100,000 Scottish population –Mid-year 2011 –3,578,984

9. Prevalence (General Practice) 1999-2011 >200 GP practices –Geography –Deprivation Read codes Total population –1,469,688 Ankylosing spondylitis –1964 Prevalence –134 per 100,000 Primary Care Clinical Informatics Unit

10. Differences 3-fold difference Important for health service resource planning Are there patients with serious spinal pathology that is currently inadequately managed?

11. QUALITY OF LIFE

12. Aims To determine risk factors for poor quality of life among patients with ankylosing spondylitis Clinical data –Medical notes Self-report postal questionnaire –Quality of life –Lifestyle factors Participants804 Male74% Average age52yrs

13. Quality of Life (ASQoL) Decreased risk – Men Increased risk – Older Increased risk – Family history Decreased risk – Men Increased risk – Older Increased risk – Family history

14. Predictors of Poor Quality of Life High disease activity Smoker (vs never) Poor function Poor spinal mobility Fatigue Widespread pain Ex-smoker (vs never)

15. Independent Predictors

16. Chronic widespread pain Fatigue Poor function High disease activity Employment status –Retired / unemployed due to ill-health History of biologic therapy

17. Predictors of Poor Quality of Life Huge variability in risk of poor quality of life Several potentially modifiable risk factors Greatest benefits –Common clinical targets –Fatigue –Chronic widespread pain –Maintain employment

18. WORK IMPAIRMENT

19. Work Impairment Many studies – impact of AS on work status Absenteeism Presenteeism –Decreased workplace productivity –Relatively under-studied Absenteeism Presenteeism

20. Aims To describe the prevalence of, and factors associated with, work impairment in AS Clinical data –Medical notes Self-report postal questionnaire –Work status –Absenteeism –Presenteeism Participants959 Male73% Average age52yrs

21. Presenteeism and Absenteeism Presenteeism –No difference - Gender –No difference - Age –Decreased risk, with increasing education

22. Predictors of Work Impairment Widespread pain Poor function Fatigue

23. Presenteeism and Absenteeism Only minority of (employed) patients reported absenteeism 71% report some work impairment –Key drivers = fatigue, pain and poor physical function Tailored non-pharmacological treatments, in addition to traditional clinical targets, may help to improve overall work productivity –Personal – may improve overall work retention –Society – may decrease the economic impact of the disease

24. Current and Future Directions BSR Biologics Register for Ankylosing Spondylitis Long-term outcomes of biologic therapy –Safety / Quality of life / Economics / Employment Uveitis / Peridontitis Smoking Switching therapy

25. Disease Flares xxxxxx What are the predictors of flare? –Triggers –Early signs and symptoms Can we identify a flare early? Can we intervene? NASS priority –Develop a greater understanding of AS triggers that lead to flares How do we measure flare? No commonly accepted method How do we measure flare? No commonly accepted method

26. Most studies –Increased disease activity (BASDAI) –No consensus in what this increase should be Brophy and Calin –Always include pain –For majority, also involve fatigue, immobility and emotional symptoms –For some, generalised symptoms (fever, muscle spasm, etc.) Fails to capture the broad nature of flares Underestimate many important aspects Systematic literature review

27. Flares Questionnaire Development Questionnaire, based upon patient-derived conceptual framework of flares Three focus groups –What happens when you have a flare? –What aspects of your disease are affected? –Describe the impact of flares –Describe the wider flare experience

28. I’d feel it coming on for about three 3 days … I’m immobilised for about 3 days … then another 3 days where it would ease off. … no matter what I took for pain relief … at the end of 3 days it would be full blown, could barely go to bed, could barely move I’ve got consistent pain in all my joints … like a hum constantly … but the flares is like a shout I don’t go down the pub and play pool, you can’t because you’re just too tired, especially after a day at work It hits you in the joints … you get very lethargic, you feel very nauseous … like I’ve got the flu coming on. I sort of get it in the back of the eyes … that just floors me because I can’t work … and if I don’t move around as much, and I start to stiffen up.

29. Focus Groups – Findings Five key domains Pain Stiffness Fatigue General malaise Extra-articular features Less about the absolute level of these domains, but more the impact on the ability to live daily life Questionnaire still in development / testing August / September (?)

30. Future Study QQQQQQQ QQ Flare Triggers?RecoveryNo triggers? Five key domains -Pain -Stiffness -Fatigue -General malaise -Extra-articular features Five key domains -Pain -Stiffness -Fatigue -General malaise -Extra-articular features Physical activity Occupational factors Lifestyle

31. Summary Prevalence –Primary care134 per 100,000[ UK = 70,000 patients ] –Rheumatology 47 per 100,000 Poor quality of life –Widespread pain / Fatigue / Leaving employment Three-quarters report work impairment –Fatigue / Pain / Poor physical function Flares … watch this space!

32. Acknowledgements Aberdeen study team –Linda Dean, Chris Burton, Elizabeth Jones, Flora Joyce, Gary Macfarlane, Mark Esson Other –Kirstie Haywood, Jane Martindale, NASS Recruiting sites –Consultants, nurses, AHPs Participants –SIRAS, BSRBR-AS, Focus Groups

33. www.abdn.ac.uk/epidemiology@hteraG_senoJ