RHEUMATOID ARTHRITIS:THE COSTS OF CARE

Dr Nicola J CooperDepartment of Epidemiology & Public Health,

University of Leicester

Funded by an Arthritis Research Campaign (ARC) PhD Studentship

                              

ACKNOWLEDGEMENTS

Professor Miranda Mugford School 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

GPs Norwich Area Health Authority

All individuals with RA who participated in the research

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

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.”

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.

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.

PERCENT DISTRIBUTION OF ECONOMIC COSTS OF ILLNESS, BY DIAGNOSIS &

TYPE OF COST: 1980 (Adapted from Rice et al,1985)

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Circulatory system

Injury & poisoning

Neoplasms

Digestive system

Respiratory system

Mental disorders

Nervous system & sense organs

Musculoskeletal system

Genitourinary system

All other diseases

Direct Morbidity Mortality

COHORT CHARACTERISTICS BY STUDY COUNTRY %

FEMALE MEAN AGE

MEAN DURATION OF DISEASE (YRS)

MEAN HAQ

SCORE CLINICAL-BASED Meenan et al 1978 USA 76 48 9.8 - Liang et al 1984 USA 80 61 13.5 - Lubeck et al 1986 USA 76 55 14.5 1.2 Wolfe et al 1986 USA 76 56 15.4 1.21 Jacobs et al 1988 USA 77 - - - Yelin 1996 USA - - - - Lanes et al 1997 USA - - - - Clarke et al 1997 Canada 75 62 20.8 1.38 van Jaarsveld et al 1998 The Netherlands 69 60 (median) =< 6 1.25 COMMUNITY-BASED Stone 1984 USA 70 - - - Spitz 1984 USA 83 54 15 - Jonsson et al 1992 Sweden - - 19 - Gabriel et al 1997b USA 73 63 - - Gabriel et al 1997a USA 68 61 - 0.96

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

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)

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

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.

Objective:“A retrospective study to

estimate the secondary health service care & 2nd line drug costs over first 5 years of

inflammatory polyarthritis”

STUDY ONE

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).

• 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)

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)

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)

COHORT CHARACTERISTICS OTHER IP

N = 225 RA

N = 208 HAQ score

< 1.0 73% 41% 1.0 27% 59%

Age (years) Mean: 52 (se 1.19) Mean: 56 (se 1.08) % female 63% 67% % smoking now 29% 29% % smoked past 44% 40% % Rfactor1 17% 55% Social Class2

I (%) 3% 1% II (%) 25% 26%

IIIM (%) 18% 21% IIIN (%) 26% 25% IV (%) 23% 24% V (%) 6% 4%

113.6% missing data; 214.6% missing data.

MEAN OUTPATIENT, INPATIENT & 2ND LINE DRUG COSTS PER PERSON

PER YEAR (RA)

0

100

200

300

400

500

600

1st year 2nd year 3rd year 4th year 5th year

Outpatient Inpatient 2nd line drugs Total

Cost £

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

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.

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.

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

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)

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

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’

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.)

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…”

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]”

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

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RESULTS OF PILOT STUDY

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

COSTING METHODS

COSTS METHOD

Forgone Paid Work Average wage rate

Forgone Unpaid (House) Work Housekeeper replacement

Forgone Leisure Time/Activities 30% of average wage rate

Informal Care Replacement of care

Health service Generic costs for UK

RESULTS

• 115 out of 133 (86%) individuals completed 6-months follow-up

% Female 71%

Mean age (SD) 57 years (13.9)

Mean disease duration (SD) 47 months (81.6)

Median EuroQol score (IQR) 0.62 (0.59 to 0.73)

Median HAQ score (IQR) 0.63 (0.13 to 1.28)

Characteristics of study participants at baseline:

MEAN 6-MONTH COSTS (UK£1999)

COSTS TO….. MEAN

COST (SD)

MEDIAN

COST (IQR)

%

Health service £385 (1060) £154 (32-343) 14%

Individual £1,297 (2557) £265 (65-1134) 46%

Relatives and friends £983 (1747) £44 (0-1192) 35%

Employer £126 (221) £0 (0-60) 5%

TOTAL £2,791 (4236) £869 (273-3451) 100%

6-month cost

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A HISTOGRAM OF 6-MONTH COST

385321N =

Categories of disease duration in years4+2-40-2

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£15,000

£10,000

£5,000

COSTS BY DISEASE DURATION

HEALTH SERVICE COSTS

22%

15%

33%

30%

GP visits O/P visits I/P stays Medication

NON-HEALTH SERVICE COSTS

Household help Health prof visits OTC MedicationForgone paid work Forgone unpaid work Forgone leisureMiscellaneous

35%

13%2%4%

19%

25%

2%

15%

1%

3%

37%

41%

2% 1%

Paid help Special diet Health professional visitsAids & modifications Forgone paid work Forgone unpaid workForgone leisure

COSTS TO THE INDIVIDUAL

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

N Mean Cost (SD) Median Cost (IQR) Female Male

78 34

3132 (4470) 2127 (3716)

1237 (340-3794) 444 (106-1701)

HAQ score <0.36 0.36-1.00 >1.00

36 38 35

1164 (2518) 2950 (4471) 4573 (4964)

294 (88-838) 1130 (379-3313) 3007 (482-6675)

Age at onset 16-39 years 40-59 years >=60 years

10 52 50

2997 (2548) 3139 (4790) 2468 (3984)

2920 (508-5056) 978 (283-3984) 508 (215-3066)

Social Class I-IIIN IIIM-V

52 59

2227 (2948) 3384 (5145)

933 (326-3184) 752 (221-5260)

Rfactor positive

negative 33 74

4472 (5359) 2197 (3610)

2251 (721-6288) 518 (187-2817)

RA classified YES NO

57 55

2416 (4777) 2216 (3601)

1000 (412-5329) 482 (158-2969)

EuroQol <0.5870 0.5870-0.6910 >0.6910

38 43 31

5262 (5591) 2377 (3248)

468 (628)

3382 (842-8159) 872 (273-2969)

221 (87-658)

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

COMPARISON (1999 UK£)Study %

femaleMean 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% 61yrs 0.96 - - £1,366

Gabriel et al (USA) 73% 63yrs - - £5,304 -

Newhall-Perry et al (USA) 80% 51yrs 1.24 0.5yrs £1,820 (42%) £2,557 (58%)

NOAR (UK) 71% 56yrs 0.79 4yrs £1,568 (28%) £4,086 (72%)

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

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.)