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Economic Burden

The Economic Burden of Parkinsons Disease

a report by

R i c h a r d D o d e l , J e n s - P e t e r R e e s e , M o n i k a B a l z e r and W o l f g a n g H O e r t e l

Abstract

Objective

estimated average of 7,600. Total costs per patient increase with

To evaluate costs and health-related quality of life (HRQoL) in

increased H&Y disease stage, from average cost of 3,400 for

patients with Parkinsons disease (PD) in Europe.

H&Y stage 1 to 15,000 for H&Y stage 5. EQ-5D index score

decreased with increasing disease severity: 0.66 and 0.48 for H&Y

Study Design and Methods

stages 1/2 and 3/4, respectively. Differences in household income

Costs and HRQoL were evaluated in patients with idiopathic PD

also had a distinct relationship with HRQoL score: 0.54 and 0.75

recruited from outpatient departments for movement disorders in

for income <750 and income >1,500, respectively. In terms of

Germany. The generic EQ-5D instrument was used to assess

clinical factors, patients with dementia (0.40 versus 0.61),

HRQoL. Clinical data Hoehn and Yahr (H&Y) stage, Unified

depression (0.57 versus 0.63), pain (0.49 versus 0.62) and

Parkinsons Disease Rating Scale (UPDRS) III and motor and non-

constipation (0.43 versus 0.76) showed the largest differences in

motor symptoms were assessed in detail. Drug costs over the

HRQoL compared with the average.

previous three months were assessed using a questionnaire. PD

medication costs were stratified by H&Y stages. Bivariate

Conclusion

correlations were calculated of the EQ-5D index score and

The results show that PD places a major burden on the individual, the

sociodemographic and clinical outcomes. Statistical significance

family and society. Costs associated with PD increase substantially

was proved by means of t-tests and Kruskall-Wallis tests.

with disease progression, and the majority of costs originate from

outside the formal healthcare system. Owing to the scarcity of

Results

epidemiological and health economic data, cost calculations are

Direct costs per patient range from 2,500 to 13,000, with an

conservative and probably underestimate the true burden of PD.

The economic burden of Parkinsons disease (PD) has become a

into direct medical (e.g. drug costs) and direct non-medical costs (e.g.

very important health topic. From the perspective of a typical

cost of care). Indirect costs are those caused by the disease, and

neurologist, health economics can appear quite dry; however, it is a

usually relate to the patients employment status. Intangible costs are

growing topic in most modern healthcare systems, so doctors should

the hardest to quantify and measure, as suitable instruments are

have at least a minimal understanding of how health economic

lacking. Traditionally, in health economic evaluations only the direct

information is derived.

and indirect costs are included, but there can be a huge difference in
the calculation simply by including or excluding one category of costs.

Starting in Australia in 1993 with the establishment of the Economics

Subcommittee of the Pharmaceutical Benefits Advisory Committee

The gold standard of health economic evaluations is comparative

(PBAC), various authorities worldwide have been set up to analyse the

analysis. There are four different kinds: cost minimisation analysis,

cost-effectiveness of drugs and other medical products. Examples are the

costbenefit analysis, cost-effectiveness analysis and costutility

German Institute for Quality and Efficiency in Health Care (IQWIG),

analysis.1 The first two are rarely used in medicine; the last two are the

established in 2004, and the National Institute for Health and Clinical

most common. The cost-effectiveness analysis compares a monetary

Excellence (NICE), established in 1999 in the UK.

amount with a measurable clinical effect, such as change in blood

pressure, weight, etc., and the result is presented in these units, for

Calculating the Costs

example per mmHg or per kg. The costutility analysis compares the

Costs, according to health economic theory, are categorised as direct,

monetary differences of two interventions with non-monetary outcome,

indirect or intangible1 (see Table 1). Direct costs are those that are

with a typical result being per quality-adjusted life year (QALY) gained

incurred as a direct result of treating the patient and can be divided

or per disability-adjusted life year (DALY) gained, with QALYs being

the most commonly used aggregate. However, there is a large debate as

Corresponding author:
Richard Dodel
PhilippsUniversity Marburg, Germany
E: dodel@med.uni-marburg.de

TOUCH BRIEFINGS 2008

to what could be the best outcome measure for utility analyses.2 Noncomparative studies include the cost-analysis study, where only the
cost of the outcome is considered. If only the burden of the illness is
taken into account, the analysis is called cost of illness analysis.

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Economic Burden
calculation of an opportunity cost in economics: it looks at the overall

Table 1: Health Economics Distinction

impact of taking a particular decision versus making an alternative

Direct
Medical
Ambulatory/inpatient care
Diagnostics
Therapy
Care

Indirect
Unemployment
Part-time work
Early retirement

Intangible
Dependency
Psychological effects
Pain

choice. It is such a powerful tool that many agencies are adopting it:
IQWIG in Germany, for instance, has stated that decision analysis is
one of its preferred tools for determining cost-effectiveness.
The Macro View
The European Brain Council (EBC) published a study on brain disorders
and their epidemiology in 2005.3 There are around 466 million people

Figure 1: Cost Breakdown for Brain Disease

in Europe, 127 million (27%) of whom have brain disorders (both

neurological and general mental health). If those with co-morbidities
are excluded, that still leaves 104 million people (22%), roughly half of
whom (51.2 million people; 11%) have a neurological condition. The
number with PD is estimated to be around 1.1 million (0.2%).4
The number of patients with PD differs across the various countries. As
of 2004, The Netherlands had the highest percentage of brain
disorders, with around 36% of the population suffering from either a
neurological or a mental disorder (17 and 19%, respectively); Spain
had the lowest at around 19% (10 and 9%, respectively). The reason
for these discrepancies is not known.
In terms of the annual cost of treatment, Germany had the highest

Hospitalisation

Drugs

Outpatient care

expenses for brain disorders, at nearly 1,400 per person in

Social services

Informal care

Other direct costs

2004; Estonia spent the least, at barely 200 per person. There is

Sick leave

Early retirement

Premature death

also a clear correlation with gross domestic product (GDP) in the

Source: Adapted from Andlin-Sobocki et al., 2005.3

different countries.
Where Is the Money Spent?
The public view in most countries is that the main medical expense is

Figure 2: Cost per Patient of Brain Disorders in Europe

doctors salaries, with drug costs second. However, in actual fact 33%
of the total cost associated with a brain disorder is caused by sick leave

40,000

from work (see Figure 1). Early retirement adds a further 7% and

35,000

premature death an additional 7%. Therefore, nearly half of the total

30,000

cost is not directly under the control of neurologists.

25,000

According to the EBC data for 2004, annual spend in Europe on PD

20,000

was 10.7 billion, consisting of 4.6 billion on healthcare costs and

15,000

6.1 billion on direct non-medical costs. This is more than 12% of the
10,000

total spend on neurological diseases in Europe, which was 83.9

Migraine

Anxiety disorders

Addiction

Trauma

Affective disorders

Epilepsy

Parkinsons
Disease

Psychotic disorders

costs, in the case of the latter because they assumed a population over

Dementia

Stroke

billion.3 These data do not include either the intangible or the indirect
Multiple sclerosis

5,000
Tumour

Cost per patient ( 2004)

Dodel

Source: Adapted from Andlin-Sobocki et al., 2005.3

With migraine, for example, indirect

There are also different ways to gather data. It is possible to gather

costs dwarf direct costs by 17:1, a fact

them as field research, for example performing a clinical study

rarely mentioned in public debates.

including economic variables in the protocol. This is usually done in a

phase II or III trial. Alternatively, there is a naturalistic design, for
example as part of a post-marketing study, or the Delphi method,
where a certain number of specialists convene to determine a
consensus on the costs involved. The other way to gather data is

65 years of age and thus already in retirement. This is a critical

through desk-based research. The meta-analysis is a common way to

omission: with migraine, for example, indirect costs dwarf direct costs

pool and analyse published data, but in recent years decision analysis

by 17:1, a fact rarely mentioned in public debates. Nevertheless,

has become the most popular tool. It employs a similar process to the

according to current data the cost per patient of treating PD is close to

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The Economic Burden of Parkinsons Disease

the median value of the cost of all brain disorders, where brain
tumours cost society the most and migraines the least (see Figure 2).

Figure 3: Composition of Annual Costs of Treating

Parkinsons Disease in Germany

In order to evaluate the cost and the health-related quality of life

(HRQoL) of patients with PD in Europe, we undertook a study in seven
European countries: Austria, Czech Republic, Italy, Germany, Portugal,
Russia and the UK. Drug costs over the previous three months were
assessed with a questionnaire. The generic EQ-5D instrument was
used to assess HRQoL, while clinical data Hoehn and Yahr (H&Y)

In Germany, treatment for patients

with dyskinesias, at 10,760 per
year, was roughly double that for
patients without.

Direct cost

Drugs

Patients

Indirect costs

Cost RV and PV

NB: RV and PV are special German retirement and care insurance payments.
Source: Adapted from Spottke et al., 2005.6

stage, Unified Parkinsons Disease Rating Scale (UPDRS) III and motor

Figure 4: Distribution of Parkinsons Disease Drug Costs

and non-motor symptoms were retrieved from the EuroPa database.5

The results from this study are currently being analysed and will be
published soon.
The Micro View
The results presented here are derived from a health economics study
that took place in Germany in 20042006, although the results are
assumed to be representative of those found in other major European
countries. The study examined 145 PD patients with an average age of
67 years in different H&Y stages and with a range of UPDRS scores
over three years.6 The researchers used a range of questionnaires in
order to fully understand the HRQoL of all of the participants, as well
as other emotional aspects. Treatment was provided by different
groups from university level through peripheral level down to the

Dopamine agonists

L-Dopa

Antiepileptics

Benzodiazepines

Opioids

Sleep medication

Pain

Iron

Others

community level.7
Results were total annual costs of 20,860 per PD patient. This
consisted of 3,720 in direct costs (excluding medications) and 3,840
in drug costs, accounting for slightly more than one-third of the total

Source: Adapted from Spottke et al., 2005.6

(see Figure 3). The indirect costs are quite high at 6,360 of the total
cost, or slightly less than one-third.

who specialised in PD. The findings of the study show that the average
reimbursement received by these neurologists was 42 per patient

Within direct costs, hospital costs were found to be the largest

over the three months. This ranged from 22.00 for a newly

contributor at 1,420 (38%). All other costs, including for the office-

diagnosed patient at an early stage of PD to 45.78 for an advanced,

based physician, diagnostics, physiotherapy, inpatient rehabilitation,

H&Y 5 patient. These do not appear to be unreasonable amounts.

transportation and walking aids, are less than 1,000 each, and thus
do not represent excessive spending where savings can be made. Of

Costs as Disease Progresses

the drug costs of 3,840, 65% is accounted for by dopamine agonists

During the course of PD costs do change. When analysing the costs by

(see Figure 4). Therefore, high-dose dopaminergic therapies

H&Y stage, several trends become apparent. Indirect costs remain

particularly those including more than one dopamine agonist will

pretty stable over the course of the disease (with an anomalous minor

significantly add to the overall cost.

blip for H&Y 4), but the costs of health insurance and care
(represented

by

PV

and

RV

[Pflegeversicherung

and

One of the claims in Germany is that office-based physicians are too

Rentenversicherung, respectively; these are special German retirement

expensive. In order to properly assess this claim, we undertook an

and care insurance payments] and direct costs) in the advanced

additional three-month study in Berlin of 12 office-based neurologists

disease stages increase disproportionately (see Figure 5).

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Economic Burden
dementia, depression and hallucinations; and autonomic dysfunction,

Figure 5: Parkinsons Disease Costs by Disease Stage

such as loss of bladder control and gastrointestinal complications. In

Cost ( 2006)

50,000
45,000

Germany, treatment for patients with dyskinesias, at 10,760 per year,

40,000

was roughly double that for patients without. Similarly, motor fluctuations

35,000

caused treatment costs to rise to 11,040 from 6,040 at baseline.6

30,000
25,000

With dementia in PD,9 the odds ratio for nursing home placement is

20,000

2.5 times higher than for non-demented PD patients. Meanwhile,

15,000

psychosis in PD raised the odds ratio to 17 times higher than

10,000

baseline.10,11 This difference, measured using the MMSE score, is

5,000

consistent across age groups (see Figure 6). Furthermore, for

0
Average

II

III

IV

demented patients with low MMSE scores, inpatient stay is nearly

doubled on average, while rehabilitation costs are more than tripled.

Indirect costs

Costs to patients

Drugs

Direct costs

PV and RV costs

Interestingly, the result was that PD patients with dementia were no

more likely to visit their physician than those without dementia, but
drug costs were around one-third higher. Similarly, the cost to HRQoL,

Source: Adapted from Spottke et al., 2005.6

for both the patient and the care-giver, is higher when the PD patient

Figure 6: Mini-mental State Examination

Annual cost ()

Dodel

7,000

Parkinsons disease is an expensive

6,000

disorder, a fact that must be faced by

5,000

both the medical community and

4,000

patients to ensure that enough

3,000

funding is available for suitable and

2,000

innovative treatments.

1,000
0
<61

6169
MMSE >25

>69
MMSE <25

has dementia. Autonomic dysfunction does not appear to affect costs,

although quality of life is reduced.6
Summary and Conclusions

Source: Adapted from Spottke et al., 2005.6

PD is an expensive disorder, a fact that must be faced by both the medical

One aspect of PD care that was not covered in the study is the cost

community and patients to ensure that enough funding is available for

incurred when a patient has to leave home and enter institutional care.

suitable and innovative treatments. The indirect costs associated with

There are no data available anywhere that directly relate to these

Parkinsons disease are greater than the direct costs: roughly 50% of the

costs. However, there are data available for Alzheimers disease, which

latter are accounted for by the cost of the drugs themselves. However, as

is assumed to be at least comparable to PD. As with PD, the

a patient develops complications, costs increase.

therapeutic and drug costs for Alzheimers disease are quite low at
the beginning, but when patients reach a mini-mental state

These data largely come from the results of a study undertaken by the

examination (MMSE) state of less than 10, about 9095% of the total

EBC. Overall, the epidemiological and disease-specific data available in

is taken up by care costs.8

most European countries are insufficient for an accurate health economic

assessment. Without these data, the different healthcare systems will not

Costs by Disease Complication

be able to determine the best areas for investment for the different

As illustrated in the article by Jos Obeso, progressive PD brings with it

neurological disorders. It is imperative that more epidemiological and

new complications over time. These include: motor complications, such as

disease-specific data are gathered so that healthcare systems and

dyskinesias and motor fluctuations; psychiatric disorders, including

neurologists are not pushed away from the patient.

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Lancet, 2001;358:9938.
2. Smith DM, Brown SL, Ubel PA, Are subjective well-being
measures any better than decision utility measures?, Health
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3. Andlin-Sobocki P, Jnsson B, Wittchen H-U, Olesen J, Costs
of Disorders of the Brain in Europe, Eur J Neurol, 2005;12
(Suppl. 1): iiiv.
4. Olesen J, Baker MG, Freund T, et al., Consensus document
on European brain research, J Neurol Neurosurg Psychiatry,
2006;77(Suppl. 1):i149.

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5. www.europarkinson.net/html/1/1_over/fs_1over.html
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its predictors for Parkinsons disease in Germany,
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9. Hely MA, Reid WG, Adena MA, et al., The Sydney multicenter
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EUROPEAN NEUROLOGICAL REVIEW VOLUME 3 ISSUE 2 2008 SUPPLEMENT: III INTERNATIONAL FORUM ON ADVANCED PARKINSONS DISEASE