1. A comparison of health care costs in Southern Sydney, NSW, involved in treating persons with Parkinson’s disease to those without Parkinson’s disease Southern Neurology

2. Introduction  Parkinson’s disease (PD) and related parkinsonism are major public health issues.  The prevalence of PD in the United States and Europe is reported to be between 150-300 per 100,000 population.  The risk of PD increases with advancing age, rising sharply after the sixth decade.  A recent Australian study has reported a crude prevalence rate of PD in Sydney for patients aged > 55 years of 776 per 100,000, which suggests that Sydney has one of the highest prevalence rates of PD in the Western world.

3. Study Year of Survey Country Age Specific Prevalence (per 100,000) Crude Prevalence Method 50-5960-6970-7980+ Li et al. 1985 (11) 1983China Urban population 92145615‡-44 Door to door 2 stages Wang YS et al. 1991(17) 1986China 29 provinces 22.589.4157.613214.6 Door to door 2 stages Wang SJ et al. 1994 (18) 1992Taiwan Farming population 78017502540 Door to door 1 stage Wang SJ et al. 1996 (19) 1993Taiwan. Kinmen Farming population 2735355651839119 Door to door 1 stage Chen et al. 2001 (20) 1993Taiwan Ilan. 122.5546.7819.72197.8367.9 Door to door 2 stages De Rijk MC et al. 1997 (14) 1990’sFrance, Italy, Netherlands, Spain. Pooled results of five studies. -62517683498- Door to door De Rijk MC et al. 2000 (15) 1990’sEuropean Pooled results of Sweden, France, Netherlands, Italy, Spain and Germany. -56516662813- Door to door Morgante et al.1992 (21) 1987Sicily 115.6430.21212.5236.7167.4 Door to door 2 stages Chan et al (5) Chan et al 1998-1999 2002-2003 Sydney, Australia Pooled results of two studies 115939519091780 Door to door 2 stages

4. Age group (years) BankstownRandwickCombined N=PD= Prevalence/100,000 (95% CI†) N=PD= Prevalence/100,000 (95% CI†) N=PD= Prevalence/100,000 (95% CI†) 55-595300 (0-3)6922899 (351-10464)12221639 (198-5918) 60-691671599 (15-3335)17831685 (347-4921)34541159 (317-2968) 70-7920383841 (1699-7764)20283960 (1707-7802)405163951 (2260-6400)  80 77810390 (4478-204687767792 (2860-16987)154149091 (4964-15272) Overall‡50117776 (452-1241)52719775 (467-1209)102836780 (546-1077) Table 1: Crude prevalence of PD per 100, 000 by age group and overall for Bankstown (2003), Randwick (1998)

5. A survey was carried out in the Bankstown local government area between August 2002 and July 2003. A total of 4080 households were letter dropped; 1238 households did not participate (i.e. refused or were unable to be contacted); 307 households could not speak English. The participation rate was 70%. Sample size and characteristics of participants There were 501 people aged 55 or above who participated in the study. Overall, the mean age was 70.9 years (SD 8.2) with a range of 55-100 years. Mean age for males was 71.3 years (SD 7.9) and for females was 70.5 years (SD 8.4); 44.7% of participants were male (224/501); 71.7% of participants were born in Australia. The male to female ratio was 0.82:1. Of the 501 participants, 135 were screened positive (that is, answered 'yes' to 2/4 screening questions for Parkinsonism, or answered 'yes' only to the question which asked “Have you noticed a tremor of your hands, arms, legs or head?” Prevalence of Parkinson’s disease in Sydney

6. Background to present study  The high prevalence of the disease, its degenerative course and quality of life implications all indicate that the economic impact of PD in Australia is likely to be significant.  Furthermore, it is probable that the utilisation of medical, allied health and community support services is likely to be significant.  A number of overseas studies investigating the costs of caring for patients with PD have found that resource utilisation correlates with the stage and severity of PD

7. Aims  determine the direct health care costs involved in treating a person with PD in the community  compare those costs to an age and sex matched healthy control without PD

8. Subjects and methods  A single centre prospective study, in which patients attending a Parkinson’s disease clinic at Calvary Hospital, Kogarah, Sydney, were invited to complete a 3-month diary detailing all medical and allied health expenses from January 1st to March 31st 2003.  Data collected included all pharmaceutical expenses (both prescription and over-the-counter), general practitioner and medical specialist expenses, as well as allied health or complementary medicine expenses incurred during this time period.  Demographic data including age, gender, race, marital status, relationship between patient and/or carer (where applicable), living arrangements, disease duration and intercurrent illnesses was also obtained.  12 patients completed their 3-month diaries. All PD patients demonstrated levodopa responsiveness and fulfilled diagnostic criteria for PD [with at least two of the following signs: resting tremor, rigidity, bradykinesia and postural instability, in the absence of other apparent causes of PD].  Twelve age and sex matched control subjects were also asked to complete a 3-month diary detailing the same information during the same time period.

9. Results  There were six male and six female subjects in both the PD and control groups.  The mean age for the PD group was 71.3 years (SD 5.9, range 62-82 years) and the mean age for the control group was 73.2 years (SD 6.7, range 63-83 years).  The mean disease duration of the PD group was 6.8 years (SD 3.6, range 2-14 years). The median Hoehn and Yahr stage was 3 (range 1-3). All 12 PD subjects had a MMSE ≥ 27.  Nine of the PD subjects referred to at least one family member as a ‘carer’ (8 spouses, 1 daughter) although the relevant family member was not a recipient of a Federal government ‘carers’ pension or allowance. Similarly, none of the PD subjects were recipients of a ‘community aged care package’.

10. Results (continued)  Three of the PD group and three of the control subjects had no intercurrent problems. In the PD group, three patients were taking levodopa monotherapy and the remaining 9 patients were taking a combination of two or more of the following: levodopa, entacapone, cabergoline, pergolide and amantadine.  Concurrent medications ‘unrelated’ to PD in the remainder of PD as well as control subjects consisted of drug therapies for hypertension, hyperlipidaemia, gastro-oesophageal reflux or peptic ulcer disease, osteoarthritis and/or osteoporosis.  Two patients in the PD group (one with PD ‘unrelated’ urological procedure and one with PD ‘related’ fall) and one control subject (urological procedure) had short stay hospital admissions during the 3-month diary period.

11. PD (n=12)Control (n=12)P value Medication*$A636 SD 226 Range $A392-1079 $A175 SD 233 Range $A0-705 p < 0.001 GP and Specialists*$A564 SD 670 Range $A147-2038 $A205 SD 397 Range $A0-1354 p = 0.12 Allied Health Care* (including physiotherapy) $A323 SD 178 Range $A83-613 $21 SD 43 Range $A0-150 p < 0.001 Other costs**$A232 SD 453 Range $A0-1500 $A12.50 SD 43 Range $A0-150 p = 0.10 Total costs$A1755 SD 1201 Range $A832-4575 $A413 SD 515 Range $A0-1678 p = 0.001 Table 1. A comparison of the community health care costs for the 3-month study period in the PD and control subjects.

12. Table 2. A comparison of the community health care costs for the 3-month study period ‘related’ to and ‘unrelated’ to PD in the 12 PD subjects. PD related (n=12)Unrelated to PD (n=12) P value Medication$A404 SD 225 Range $A135-895 $A232 SD 242 Range $A0-587 p = 0.17 GP and Specialists$A293 SD 368 Range $A98-1442 $A271 SD 534 Range $A0-1909 p = 0.91 Allied Health Care (including physiotherapy) $A304 SD 180 Range $A83-613 $19 SD 19 Range $A0-50 p < 0.0001 Other costs**$A200 SD 457 Range $A0-1500 $A32 SD 100 Range $A0-351 p = 0.26 Total costs$A1202 SD 820 Range $A520- 3563 $A553 SD 591 Range $A38-1924 p = 0.03

13. Discussion  The largest single health care expense in the present study was medication cost, in part due to the treatment cost of co- morbidities.  Pressley et al, also recognised pharmaceutical expenditure for co- morbidities as a significant cost factor in United States of America (US) patients with parkinsonism.  In a second US study, Whetten-Goldstein et al, determined the mean societal burden of PD to be approximately $US6000 per year, with the single most important factor being compensation for earnings lost.  In a ‘resource use’ questionnaire of 444 PD patients attending United Kingdom general practitioner practices, Findley et al, found that the total mean annual cost of care per patient (for all patients) was 5,993 pounds and that the patients’ Hoehn and Yahr stage significantly influenced expenditure.  A Swedish study of 127 PD patients found that direct health care costs averaged $US2900 per patient per year (with medication found to be the most costly component) but nonmedical direct costs were even higher averaging $US4300 and costs due to lost productivity the highest, averaging $US5,200.

14. Conclusions  The mean 3-month total (both related and ‘unrelated’ to PD) health care cost for the PD group was significantly higher than the ‘healthy’ control group ($A1755, SD 1201 versus $A413, SD 515, p=0.001).  The total direct health care cost of PD for our patients with Hoehn and Yahr stage  3 was four times that of age and sex matched ‘healthy’ controls.  Medication was the most costly component for both groups (PD $A636, SD 226 versus controls $A175, SD 233, p<0.001).  The estimated annual cost ($A7020 per patient) in our patient cohort was comparable to that reported in the United States and Europe.  This would equate to $A5.5 million/yr/100,000 population age > 55 years (~$A300 million/yr) based on statistics from PD prevalence study in Sydney.