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Funded by an Arthritis Research Campaign (ARC) PhD Studentship

RHEUMATOID ARTHRITIS: THE COSTS OF CARE Dr Nicola J Cooper Department of Epidemiology & Public Health, University of Leicester. Funded by an Arthritis Research Campaign (ARC) PhD Studentship. ACKNOWLEDGEMENTS. OUTLINE. Cost of illness (COI) studies;

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Funded by an Arthritis Research Campaign (ARC) PhD Studentship

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  1. RHEUMATOID ARTHRITIS:THE COSTS OF CAREDr Nicola J CooperDepartment of Epidemiology & Public Health, University of Leicester Funded by an Arthritis Research Campaign (ARC) PhD Studentship

  2. ACKNOWLEDGEMENTS

  3. OUTLINE • Cost of illness (COI) studies; • State of knowledge of economic impact of RA; and • Study One:Retrospective study of the secondary health care and second line drug costs of early RA. • Study Two: Prospective study of costs of early RA to patient, health service and other agents

  4. COST OF ILLNESS STUDIES • Definition: “Descriptive studies which provide informative data to emphasise the scale and nature of a disease as a health problem and raise the profile of people with that disease as a patient group.”

  5. VALUE OF COI STUDIES • Provides policy-makerswith information on total costs of a disease; • Identifies where major burden of cost might lie in treatment and care of these people; • Helps to prioritiseresearch agendas; & • Provides an indication of potential gains from preventing the condition.

  6. TYPES OF COSTS • Direct costs:Borne by the health care system, community & family in directly addressing the problem. • Indirect costs:Mainly productivity losses caused by illness, borne by the individual, family, society or employer. • Psycho-social costs: Usually costs of pain, grief, suffering & loss of leisure time.

  7. PERCENT DISTRIBUTION OF ECONOMIC COSTS OF ILLNESS, BY DIAGNOSIS & TYPE OF COST: 1980 (Adapted from Rice et al,1985)

  8. COHORT CHARACTERISTICS BY STUDY

  9. KEY FINDINGS • Mean costs per person per annum • Direct = UK£3,575 (US$5,720 ) [Range: UK£1,189 to UK£7,189] • Indirect = UK£3,060 (US$4,900 ) [Range: UK£ 676 to UK£11,514] • Ratio Direct : Indirect Ranged from 0.40 to 3.00

  10. KEY FINDINGS (cont.) • Annual direct costs RA = UK£4,546 (US$7,274) non-RA= UK£1,198(US$1,917) • Annual indirect costs RA = UK£1,171 (US$1,874) non-RA= UK£ 531(US$ 849)

  11. CONCLUSION • Few previous studies of the cost of RA in the UK • Previous studies took a ‘top down’ rather than a ‘bottom up’ approach • Few previous studies considered the cost to the individual patient and their family

  12. RECOMMENDATIONS FOR FUTURE COI STUDIES 1.Report direct & indirect costs separately as well as in aggregate; 2. Identify different components of costs to identify budgets on which major economic burden falls; 3.State data sources & unit costs to allow estimates to be reworked for different locations; 4.Test sensitivity of results by varying assumptions underlying key parameters.

  13. STUDY ONE Objective:“A retrospective study to estimate the secondary health service care & 2nd line drug costs over first 5 years of inflammatory polyarthritis”

  14. STUDY POPULATION • 433 people with inflammatory polyarthritis (IP), who registered with the Norfolk Arthritis Register (NOAR) project in 1990/91. • Selection criteria: 1) Aged over 16 years; 2) Swelling of two or more joints; 3) Disease duration  4 weeks; & 4) Disease onset after January 1989. • Of which, 208 people (48%) diagnosed as RA (defined by the ACR 1987 revised criteria).

  15. NORFOLK ARTHRITIS REGISTER (NOAR) • Primary care based inception cohort of patients with inflammatory polyarthritis (IP) • NOAR Methdology • Patients seen by a metrologist within 2 weeks of notification • Followed annually for at least five years • Annual assessment includes Health Assessment Questionnaire (HAQ)

  16. DATA SOURCES • RESOURCE USE DATA: • NOAR Database(e.g. No. of outpatient visits & inpatient stays, medications, patient characteristics) • Hospital Medical Records & H.I.S.(e.g. Length of hospital stay & department - Rheumatology or Orthopaedic) • GP Guidance Notes(e.g. Typical treatment regimes and routine laboratory tests)

  17. DATA SOURCES (cont.) • UNIT COSTS: • British National Formulary (e.g. Medication) • Hospital Laboratories (e.g. Laboratory tests) • Hospital Finance Department (e.g. Inpatient day & outpatient visit) COSTING EQUATION n m TOTAL COST =   (frequency)ij* (unit cost)i i=1 j=1 where i = ith individual (i = 1,......n) j = jth service received (j = 1,......m)

  18. COHORTCHARACTERISTICS

  19. MEAN OUTPATIENT, INPATIENT & 2ND LINE DRUG COSTS PER PERSON PER YEAR (RA) Cost £

  20. KEY RESULTS[Cost estimates expressed in 1997/8 UK£’s] • Total 5-year cost: RA = £487,230 Other IP = £193,590 • Mean annual cost per personRA = £410 (CI £315 to £505) Other IP= £150 (CI £111 to £189 • Cost breakdown (RA-cohort): 55% Inpatient stays; 9% Outpatient visits & 36% 2nd line drugs

  21. KEY RESULTS (cont.) • RA-Cohort • 11% incurred ‘no costs’. • 23%(who all incurred inpatient costs) responsible for approx. 75% of total 5-yr costs. • High costs over first5yrs related to: - HAQ score  1.0; - Presence of Rheumatoid factor.

  22. COSTS OF EARLY RA IN THE UK • Based on 15,000 new cases of RA per year (Symmons et al 1994): • Total 5-year secondary care and 2nd line drug costs (including monitoring) for new cases approx. £30.9 million[1997/8£]. - £17.0m = Inpatient care; - £ 2.8m = Outpatient care; & - £11.1m = 2nd line drugs.

  23. STUDY TWO Objective:“A prospective longitudinal study to estimate the costs to the patient, their families and the health service, over first 5 years of inflammatory polyarthritis”

  24. OBJECTIVES • PART A: To develop aresource-use and expenditure questionnairefor self-completion by early IP individuals over a 6-month period • PART B: To estimate the costs associated with early IP(Health service(e.g. health professionals’ time, hospital costs, prescribed medication) andNon-health service(e.g. travel time, informal care, lost time from work, aids & modifications, over-the-counter medication, alternative therapies)

  25. PART A: METHODS • Study methods: • 2 Focus Groups • 3-Month Data Collection (Pilot & validation) • Study population: • Focus groups: RASCAL & NOAR patients • Pilot & validation study: 12 NOAR & 12 Cheshire patients with early IP

  26. FOCUS GROUPS ‘QUESTIONS ROUTE’ OPENING QUESTIONS: 1. How would you spend your time differently if you did not have arthritis? 2. What would you say was the most significant consequence of your arthritis? 3. How has your lifestyle changed to accommodate your arthritis? MORE SPECIFIC QUESTIONS: 4. Tell me about the aids you have and modifications you have had done to help you around the home. ..What about outside the home? 5. Have you become more reliant on other people (e.g. friends, neighbours, relatives, social services) since the onset of your arthritis? ….If so, who? ….How do they help i) you, ii) your children, iii) other dependants?

  27. FOCUS GROUPS ‘QUESTIONS ROUTE’ (cont.) 6. How do you cope with everyday chores such as shopping and housework? 7. Has your arthritis had an impact (both positive and negative) on important events in your life? ….Changing pattern of work / job? ….Family relationships? ….Accommodation? 8. Can you describe how your arthritis has affected you emotionally? 9. Have your family, relatives and/or friends incurred any additional costs as a results of your arthritis? CLOSING QUESTION: Following a summary of the issues and topics discussed….. 10. In keeping with the discussion that has just occurred, are there any other forms of costs that you think should be considered?

  28. RESULTS • Forgone leisure time / activities • “..planning in advance is a must…not actually just go and do it - we’d have to plan is it feasible? ” • “My husband did do a lot of orienteering so it’s spoilt it for him - so it’s not just yourself” • Reliance on other people • “[My husband] had to do everything - I couldn’t get to the bathroom, I couldn’t get out of bed, I couldn’t sit up…” • “I need help with packing [my shopping]” • Life events • “I loved my job…..I’ve worked for the whole of my life and that was my life basically…”

  29. RESULTS (cont.) • Emotions • “Emotionally [having arthritis] an awful thing to adjust to…..you’re sitting there now waiting for other people to do things for you all day long” • Aids & modifications to home, garden & car • “I had to have the bathroom altered to make it easier. I had to bear that expense myself!” • “I would so welcome powered steering but I can’t afford to change [my car]….if I could have adaptations I would feel able to travel further [on my own]”

  30. QUESTIONNAIRES FOLLOW-UP: • Employment • GP surgery, hospital, other health professional visits • Inpatient stays • Prescription Medications • Other Medications • Assistance & Care • Aids & Modifications • Miscellaneous • General Health INITIAL: • Participant characteristics • Employment • Assistance & Care • Travel to the GP surgery, hospital, other health professionals • Aids and Modifications • Miscellaneous • General Health

  31. RESULTS OF PILOT STUDY

  32. PART B: METHODS • Study methods: • Prospective longitudinal study conducted over 6 month period • Study population: • Random sample of 133 individuals with IP recruited from NOAR database (<5years disease duration) • Data collection: • Self-completion postal questionnaire, ‘Memory aid’ diary

  33. COSTING METHODS

  34. RESULTS • 115 out of 133 (86%) individuals completed 6-months follow-up Characteristics of study participants at baseline:

  35. MEAN 6-MONTH COSTS (UK£1999)

  36. A HISTOGRAM OF 6-MONTH COST 50 40 30 20 Number of individuals 10 0 0 3000 6000 9000 12000 15000 18000 6-month cost

  37. COSTS BY DISEASE DURATION £20,000 £15,000 £10,000 £5,000 Total 6-month cos N = 21 53 38 0-2 2-4 4+ Categories of disease duration in years

  38. HEALTH SERVICE COSTS 22% 30% 15% 33% GP visits O/P visits I/P stays Medication

  39. NON-HEALTH SERVICE COSTS Household help Health prof visits OTC Medication Forgone paid work Forgone unpaid work Forgone leisure Miscellaneous

  40. COSTS TO THE INDIVIDUAL 2% 1% 15% 1% 3% 41% 37% Paid help Special diet Health professional visits Aids & modifications Forgone paid work Forgone unpaid work Forgone leisure

  41. MEAN 6-MONTH COSTS SPLIT BY CHARACTERISTICS (UK£)

  42. CONCLUSIONS • 85% of Total costs = Non-health care costs • Vast variability in costs between individuals - 6% of individuals who incurred an inpatient stay accounted for 42% of the total 6-month costs • Health service and Non-health service costs highly correlated • Main predictorsof cost: HAQ score and Rheumatoid factor – positive association

  43. COMPARISON (1999 UK£)

  44. OVERALL CONCLUSIONS • Similarities to Asthma and Multiple Sclerosis • High inpatient stay costs • High informal care costs • Costs likely to be higher in established IP (i.e. in terms of surgery & care costs) • Useful information for budget planning both health & social services

  45. RELATED PUBLICATIONS Cooper NJ. Economic burden of rheumatoid arthritis: A systematic review. Rheum. 2000; 39: 28-33. Cooper NJ, Mugford M, Scott DGI, Barrett E. Secondary health service care and second line drug costs of early inflammatory arthritis in Norfolk. J. Rheum. 2000; 27: 2115-2122. Cooper NJ, Mugford M, Symmons DPM, Barrett EM, Scott DGI. Total costs and predictors of costs in individuals with early inflammatory polyarthritis: A community prospective study.Rheum. 2002;41: 767-774. Cooper NJ, Mugford M, Whynes DK, Symmons DPM, Barrett EM, Scott DGI. Development of resource-use and expenditure questionnaires for use in rheumatology research.(Submitted to J. Rheum.)

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