Arthritis: Understanding the Global Burden and Advocating for Change

1. Global Burden of Disease –where does arthritis fit? Associate Professor Fiona Blyth MBBS (Hons) FAFPHM, PhD

2. In this talk • Introduction – how epidemiology contributes to advocacy • History: from stigma and judgment to human rights • The big picture of Global Health • GBD • Some important considerations across the lifespan • Advocacy

3. In this talk • Introduction – how epidemiology contributes to advocacy • History: from stigma and judgment to human rights • The big picture of Global Health • GBD • Some important considerations across the lifespan • Advocacy

4. Why we need good information about arthritis in the population To get visibility as a health care problem To compete with other more ‘established’ conditions for limited health resources To highlight areas of unmet need To have the opportunity to learn about those who are ‘doing well’ with arthritis

5. What do epidemiologists have to do with it? We look at the size, patterns, causes and consequences of health problems in population groups This can help to lobby for extra resources by providing a shape and form for health problems It can help gauge how advances developed in specialised settings might translate “out there” in the community

6. Putting it together…adapted from Blyth 2010 ARTHRITIS-FOCUSSED STUDIES GENERAL HEALTH SURVEYS Shape Place Voice RISK FACTORS/ BURDEN WITHIN SPECIFIED POPULATIONS HOW COMMON/ SEVERE IS ARTHRITIS COMPARED WITH OTHER CONDITIONS?

7. Giving arthritis and musculoskeletal problems a voice

8. In this talk • Introduction – how epidemiology contributes to advocacy • History: from stigma and judgment to human rights • The big picture of Global Health • GBD • Some important considerations across the lifespan • Advocacy

9. History has some lessons for us-1 The Lancet, 1932

10. Sound familiar? ‘The reasons for dealing with chronic rheumatism systematically on a national scale include the following… The disease at present causes a large loss in money, and an immense amount of preventable suffering and crippledom. Nothing systematic is at present being done in England, whereas, other countries e.g. Germany and Sweden – find it worth their while to tackle the problem. Lay opinion is in favour of action, but lacks medical guidance, while research, which is very desirable in this group of diseases, could be stimulated and rendered possible on a larger scale than at present.’ Copeman, Lancet 1932

11. Hmmm… ‘Research is an urgent need in this branch of medicine. The subject of chronic rheumatism has never, until recently, inspired enthusiasm, except in few individuals, and is therefore most neglected’ Copeman, Lancet 1932

12. Here comes the competition! Lastly, it is suggested that possibly other diseases should also be singled out for special treatment. But such a scheme is necessary only in the case of a chronic disease which occurs on a scale large enough to merit the title of a social menace. These diseases are four in number Copeman, Lancet 1932

13. Tuberculosis – Efficient scheme already in force. Venereal diseases – Efficient scheme already in force. Cancer – Owing to dramatic appeal of this disease adequate voluntary effort is forthcoming. Chronic rheumatism – The most costly of the three (to the country), but lacking in dramatic appeal because it is not fatal. Scheme suggested Copeman, Lancet 1932.

14. History has some lessons for us-2 • 1944 • 25 soldiers with backache/no organic signs • British army hospital in Italy • ‘Biopsychosocial’ assessment British Medical Journal 1946

15. Psychological assessment Paulet, BMJ 1946 • “Four patients had an immature personality; they were shy mother-fixated emotionally adolescent male virgins” • “Of the 25 patients, 20 had an inadequate personality. Those who habitually interpret their failures as due to circumstances unjustly thrust upon them, may reach a quasi-paranoid state, losing the self-criticism that is essential for social harmony”

16. Paulet, BMJ 1946 • “it is hard for a simple-minded hypochondriac to adopt any other attitude than that he has been unjustly accused of malingering. If he had no psychological disability before this event, he would certainly have one after it” • “The mechanism of low back pain remains obscure” • Stigmatized and judged

17. 2010 Declaration of Montreal

19. In this talk • Introduction – how epidemiology contributes to advocacy • History: from stigma and judgment to human rights • The big picture of Global Health • GBD • Some important considerations across the lifespan • Advocacy

20. Why is the Global Burden of Disease important? • Changing global demography • Changing global economy • Changing patterns of disease and disability • Need for a comprehensive and systematic revision of global burden of disease estimates

21. The World by land area(Worldmapper http://www.worldmapper.org/)

22. The world sized by population aged over 65 years (Worldmapper)

23. The world sized by global burden of diabetes (Worldmapper)

24. The world sized by global spending on public health (Worldmapper)

25. The funding hasn’t followed this rapid change...Stuckler et al, Lancet 2008 Chronic diseases Chronic diseases

26. In this talk • Introduction – how epidemiology contributes to advocacy • History: from stigma and judgment to human rights • The big picture of Global Health • GBD • Some important considerations across the lifespan • Advocacy

27. Burden of Disease • Burden of Disease is a way of measuring and ranking the effects of diseases on the health of populations • Two parts to this: death and disability (and both combined)

28. Impact of previous GBD findings • Highly influential • Stimulated national burden of disease studies • informed governmental and non-governmental priorities for research, development, policies and healthcare funding

29. GBD 2010 Overall Aims To produce new, robust, and reliable estimates of burden for all major diseases, injuries, and risks that are widely disseminated, understood, and easily used by policymakers, researchers, funders and practitioners.

30. GBD 2010 • GBD 2010 started in 2008 • Major findings published in December 2012 in The Lancet • More than 175 diseases and injuries, 20 risk factors • More than 400 experts around the world involved

31. GBD 2010globalburden.org Key collaborators: Johns Hopkins University Harvard University University of Queensland* Institute for Health Metrics and Evaluation at the University of Washington World Health Organization

32. Musculoskeletal conditions in GBD: evolution over time • Osteoarthritis (GBD 1990, 2000, 2010) • Rheumatoid arthritis (GBD 1990, 2000,2010) • Low Back pain ( LBP in GBD 2000, 2010) • Neck Pain (GBD 2010) • Gout (GBD 2010) • Other MSK (GBD 2010)

33. Brief overview of what was done Each expert group found all the relevant studies in their disease area over a fixed time period around the world and assessed them (quality, main findings) Each group then had to work out the main common patterns of this disease from the available studies (e.g. acute, chronic, mild, severe, short-term, long-term, mortality) The next task was to measure how much disability occurred with these common patterns: DIFFICULT! All this information was put together (very complicated!) by a central coordinating team based in the USA (the Core Team) to produce rankings of diseases according to deaths caused, disability caused and combined death and disability (=BURDEN OF DISEASE)

34. How was disability measured? • For each common pattern of each disease: • A simple (lay) description of what a person in this state would experience was developed • People in different countries were asked to make comparisons between two descriptions for two conditions – these were used to assess how disabling all patterns of all diseases were (‘disability weights’)

35. The first set of questions asks about capacity in different areas of functioning. Indicate by checking either ‘yes’ or ‘no’ whether a person would be able to perform the following functions. Rising: Rise from lying position on the ground (Yes/No); Rise from sitting position on the ground (Yes/No) Building a lay description from the Health State Checklist

36. The second set of questions asks about specific symptoms or problems. Indicate by checking either ‘yes’ or ‘no’ whether a person would experience the symptom or problem, and indicate average duration and/or frequency where relevant Feeling worried or anxious (Yes/No; # days per week;# hours per day) Building a lay description from the Health State Checklist

37. Quite a process! WHY BOTHER? • Final versions had to be concise • Modified after feedback from GBD central team which had oversight of all disease groups • Major restrictions on both length and content

38. The final lay descriptions - LBP • ACUTE BACK PAIN WITH LEG PAIN - “person with severe back and leg pain” This person has severe back and leg pain, which causes difficulty dressing, sitting, standing, walking, and lifting things. The person sleeps poorly and feels worried. • CHRONIC LOW BACK PAIN WITH LEG PAIN - “person with constant back and leg pain” This person has constant back and leg pain, which causes difficulty dressing, sitting, standing, walking, and lifting things. The person sleeps poorly, is worried, and has lost some enjoyment in life.

39. OsteoarthritisLay Definitions • MILD OA - “the person with the mild pain and stiffness in the legs” This person has moderate pain and stiffness in the legs which causes difficulty running, walking long distances and getting up and down. • MODERATE OA - “the person with the moderate pain in the hips &/or knees” This person has moderate pain in the leg, which makes the person limp, and causes some difficulty walking, standing, lifting or carrying heavy things and getting up and down and sleeping. • SEVERE OA - “the person with the severe constant pain in the hips &/or knees” This person has severe pain in the leg, which makes the person limp and causes a lot of difficulty walking, standing, lifting and carrying heavy things, getting up and down, and sleeping.

40. Survey webpage http://gbdsurvey.org/

43. New and important addition to this process • People in developing countries were also asked to do the same ratings in household surveys (Bangladesh, Indonesia, Peru, South Africa, Tanzania; USA to compare) • Interestingly, the results were quite similar across countries • Previous GBD studies had relied on experts

44. ‘Democratization of data’ • Open access data visualisation tools rapidly made available on Institute of Health Metrics Evaluation website: • http://www.healthmetricsandevaluation.org/gbd/visualizations/country

45. http://www.healthmetricsandevaluation.org/gbd/visualizations/countryhttp://www.healthmetricsandevaluation.org/gbd/visualizations/country

46. Musculoskeletal conditions Widespread recognition of the huge disability burden globally and locally related to MSK conditions (NB low back pain, neck pain) Surprisingly low disability weights for osteoarthritis Significant gaps in basic information from many countries Lack of consistent data needs to be addressed in the future (eg, severity and length of episodes)

47. In this talk • Introduction – how epidemiology contributes to advocacy • History: from stigma and judgment to human rights • The big picture of Global Health • GBD • Some important considerations across the lifespan • Advocacy

48. Musculoskeletal problems matter early in life • Key findings from epidemiological studies of pain in childhood and adolescence • Pain is common in childhood and adolescents, shows evidence of common underpinnings, and seems to have distinctive trajectories over time • Key findings from birth cohort studies of experiences early life influence later health in adulthood • Broad, subtle and pervasive effects on musculoskeletal health happen early in life • Big potential for gains in years lived without pain disability

50. Key findings • Working age people with long-term back problems were more than two and a half times more likely not to be in the labour force • With three or more additional conditions, this goes up substantially – more than nine times more likely not to be in the labour force • Early retirement due to back problems will substantially reduce accumulated wealth