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RHEUMATOID ARTHRITIS: THE COSTS OF CARE Dr Nicola J Cooper Department of Epidemiology & Public Health, University of Leicester Funded by an Arthritis Research.

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Presentation on theme: "RHEUMATOID ARTHRITIS: THE COSTS OF CARE Dr Nicola J Cooper Department of Epidemiology & Public Health, University of Leicester Funded by an Arthritis Research."— Presentation transcript:

1 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

2 ACKNOWLEDGEMENTS Professor Miranda MugfordSchool of Medicine, Health Policy and Practice, University of East Anglia Professor Deborah Symmons, Dr Nicola Wiles ARC Epidemiology Unit, University of Manchester Bett Barrett, NOAR Metrologists Norfolk Arthritis Register, St Michaels Hospital, Aylsham Professor David GI Scott, Rheumatology staff Norfolk and Norwich Hospitals GPsNorwich Area Health Authority All individuals with RA who participated in the research

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-makers with information on total costs of a disease; Identifies where major burden of cost might lie in treatment and care of these people; Helps to prioritise research 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.



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

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 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) NORFOLK ARTHRITIS REGISTER (NOAR)

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 wherei = ith individual (i = 1,......n) j = jth service received (j = 1,......m)



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 person RA = £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 first 5yrs 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 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 STUDY TWO

24 OBJECTIVES PART A : To develop a resource-use and expenditure questionnaire for 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) and Non-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 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? FOCUS GROUPS QUESTIONS ROUTE

27 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? FOCUS GROUPS QUESTIONS ROUTE (cont.)

28 RESULTS Forgone leisure time / activities –..planning in advance is a must…not actually just go and do it - wed have to plan is it feasible? –My husband did do a lot of orienteering so its spoilt it for him - so its not just yourself Reliance on other people –[My husband] had to do everything - I couldnt get to the bathroom, I couldnt get out of bed, I couldnt sit up… –I need help with packing [my shopping] Life events –I loved my job…..Ive 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…..youre 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 cant afford to change [my car]….if I could have adaptations I would feel able to travel further [on my own]

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


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


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


36 6-month cost 1800015000120009000600030000 Number of individuals 50 40 30 20 10 0 A HISTOGRAM OF 6- MONTH COST

37 385321N = Categories of disease duration in years 4+2-40-2 Total 6-month cos £20,000 £15,000 £10,000 £5,000 COSTS BY DISEASE DURATION

38 HEALTH SERVICE COSTS 22% 15% 33% 30% GP visitsO/P visitsI/P staysMedication

39 NON-HEALTH SERVICE COSTS Household helpHealth prof visitsOTC Medication Forgone paid workForgone unpaid workForgone leisure Miscellaneous

40 15% 1% 3% 37% 41% 2% 1% Paid helpSpecial dietHealth professional visits Aids & modificationsForgone paid workForgone unpaid work Forgone leisure COSTS TO THE INDIVIDUAL


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 predictors of cost: HAQ score and Rheumatoid factor – positive association

43 COMPARISON (1999 UK£) Study% female Mean Age Mean HAQ score Mean duration Direct costs (%) Indirect costs (%) Community-based (Annual costs, UK£) Spitz (USA)83%54yrs-15yrs£4,777- Jonsson et al (Sweden)---19yrs£1,985 (62%)£1,202 (38%) McIntosh (UK)78%---£4,906 (48%)£5,282 (52%) Gabriel et al (USA)68%61yrs0.96--£1,366 Gabriel et al (USA)73%63yrs--£5,304- Newhall-Perry et al (USA)80%51yrs1.240.5yrs£1,820 (42%)£2,557 (58%) NOAR (UK)71%56yrs0.794yrs£1,568 (28%)£4,086 (72%)

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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