Economic and social burden of Parkinson disease

Jasmine Pavlova

Faculty of Public Health, Medical University - Sofia

(abstract)

Parkinson’s disease is a degenerative disorder of the central nervous system that often
impairs motor skills and speech. Less well known, but of equal importance, are non-motor
symptoms which do not affect movement but can have a profound impact on quality of life.
Non-motor symptoms can include loss of sense of smell, depression, sleep problems and
incontinence.
Parkinson’s disease affects 4 million people worldwide. In Europe their number is
estimated to be around 1.1 million (0.2%); In Bulgaria they are around 30000 people,
representing 0.4% of the population.
The cost of Parkinson’s disease can be calculated in direct (medications and healthcare
use) and indirect (lost productivity, cost of providing care, and mortality) costs. Because it’s
characterized by prolonged disability, indirect costs of productivity loss (46%) and
uncompensated care by family and household members (21%) represent the largest
component of the total burden (67%). Inpatient care costs, largely attributed to nursing home
care, are the biggest component of direct costs and account for 19.9% of total costs. The
smallest portion of PD cost falls on outpatient care (4%) and prescription drugs (4–5%). In
European countries, treatment costs vary widely: in Germany 1400-1500, Bulgaria - 150-200
Euro per year.
Parkinson’s disease is an expensive disorder, a fact that must be faced by both the
medical community and patients to ensure that enough funding is available for suitable and
innovative treatments.

Background
Parkinson’s disease (PD) is a common, chronic neurological condition affecting just
over 1 per 1000 and increasing in incidence in older ages (12). Less well known, but of equal
importance, are non-motor symptoms which do not affect movement but can have a profound
impact on quality of life. Non-motor symptoms can include loss of sense of smell, depression,
sleep problems and incontinence. Early diagnosis can prove difficult but is usually defined by
the presence of at least two of the primary physical symptoms (tremor, rigidity, bradykinesia,
and postural instability). Primary symptoms can manifest themselves in many ways, including
slowness, stiffness, an inability to initiate movement, a stooped posture, an impassive face,
and a shuffling gait. Difficulties may be observed with walking and balance, dressing, and
speech and communication, along with loss of dexterity or fatigue. As the disease progresses,
the physical symptoms may affect other aspects of daily life and create additional
psychological and social problems. (19) Currently, no cure for PD is known, although
pharmaceutical and surgical treatments can be effective in managing some of the symptoms.
Therefore the aim of any treatment must primarily be to improve quality of life.
Parkinson’s disease affects 4 million people worldwide. In Europe their number is
estimated to be around 1.1 million (0.2%); In Bulgaria they are around 30000 people,
representing 0.4% of the population. (17, 18, 19)
The mean age of onset of Parkinson’s is approximately 60 years. It usually occurs in
people over the age of 50 years, but can sometimes present in younger adults in their 30s to
50s (and rarely even younger). (4, 5) Parkinson’s disease shows a clear age-relationship, with
incidence rising with increasing age, i.e. more people are diagnosed with Parkinson’s in older
age groups. (14) Disease prevalence estimates vary from country to country around the world:
both genetic predisposition and environmental factors may play a role. Caucasians in Europe
appear to have the highest prevalence. (10)

Material and methods

In this paper we have set ourselves the objective to study, as far as possible, the
economic and social costs of Parkinson's disease. For its implementation we have applied the
documentary method, the economic analysis, sociological methods for assessing the quality of
life of patients suffering from Parkinson's.

Results and discussion

Although treatment is improving steadily, researchers have not yet found a way to
prevent or cure Parkinson's disease. But symptoms can be effectively controlled, often using a
combination of treatments, conventional therapies (such as physical therapy, speech therapy),
complementary therapies (aromatherapy, reflexology, yoga and Tai Chi) and surgical
treatments like deep brain stimulation (DBS). (9, 10)
There are many antiparkinsonian medications, their availability varies across
countries. The most widely used drugs are levodopa, dopamine agonists, Komteh inhibitors
and MAO-B inhibitors. Since Parkinson's disease affects each person differently, there is no
single optimal treatment and periodic reviews are necessary to change therapy accordingly
progression of symptoms. (6, 11)
Parkinson's disease is different for everyone, as occurs with different symptoms.
Symptoms can occur at any age, but the average age 60 years. It is rare in people under 30
years. Symptoms of the disease can affect quality of life. Parkinson's disease is a progressive
disease which means that symptoms will worsen over time. However, with proper treatment
most people continue to live normal lives for many years. Importantly, such as signs and
symptoms of the disease as quickly, seek medical advice to implement treatment options. (11)
In the early stages of the disease symptoms of the disease are hosted different for
everyone. Slowness of movement in one hand is often one of the earliest symptoms and
walking can also appear to reduce hand movement. This usually is accompanied by pain in the
shoulder. Most people initially have tremor, which in the beginning is very light and occurs
mostly at rest. Tremor often affects the hand but sometimes the legs can also be affected. Up
to 15% of people with Parkinson's disease can never have tremor in the development of
disease. Symptoms often begin on one side of the body. When the dominant hand is affected,
the symptoms are more noticeable when performing simple to tasks such as writing. Those
who have tremor in the dominant hand is likely to be placed early diagnosis and begin
treatment. Therefore it’s important not to overlook the symptoms of the nondominant part as
light they are. People in early stages of the disease may also have problems with balance, as
they may be unstable while standing up or have difficulty in turning or making sudden
movements. People with Parkinson's disease often use less mimic and speak in a low voice.
No motor symptoms such as sleep disorders, depression and anxiety may also occur often
before motor symptoms. (2, 13)
If Parkinson's disease is left untreated, can affect the quality of life. Symptoms may be
particularly severe when the patient is young, as young people have to live with symptoms for
longer than older people. 5-10% of people with Parkinson's disease are under the age of 45.
This is called early onset disease. For workers, if left untreated, Parkinson's disease can affect
their ability to work. For example, as the disease progresses, the use of computer handling,
machinery or driving can be very difficult. For some people the symptoms may progress to a
degree that could not work at all. (8)
 About 30-40% of patients with Parkinson's are with depression. The ability of people
to cope with the symptoms of Parkinson's disease, their self-esteem and social support they
receive could be related to depression. People with Parkinson's disease may feel socially
isolated because feel that their family and friends do not understand their condition. They are
not able to participate as usual in social activities. Lack of sleep may also affect quality of life
and Functioning as whole. But with proper treatment the symptoms of Parkinson's disease can
be controlled and the patient can continue to live normally for a long time. (3, 16)
There is currently no cure for Parkinson's disease, but there are many treatments that
are effective in improving the symptoms. It is very important to induce patients to awareness
of their symptoms and starting treatment early. Medicines used most often replace or imitate
the effect of dopamine - the mediator is produced by the brain and controls the muscles of the
body and movements. These drugs improve motor symptoms of the disease as rigidity, tremor
and slowness. (2, 9)
The methods of treatments progress continually. In particular, drugs that can slow the
progression of the disease are investigated. These treatments should be started as soon as
possible and continue throughout the course of disease. Slowing the progression of
Parkinson's disease, people can maintain good quality of life for a long time.
In Bulgaria we find large differences in the flow information: data from National
Health Insurance Fund reports that patients with Parkinson are about 2000, according to
doctors and patient groups, their number exceeds 30000. Until recently, NHIF fully assumed
the cost of treating these patients currently covers only a quarter. (17, 18)
Costs, according to health economic theory, are categorised as direct (medical,
ambulatory/inpatient care, diagnostics, therapy and care), indirect (unemployment, part-time
work, early retirement) or intangible (dependency, psychological effects, pain). Direct costs
are those that are incurred as a direct result of treating the patient and can be divided into
direct medical (e.g. drug costs) and direct non-medical costs (e.g. cost of care). Indirect costs
are those caused by the disease, and usually relate to the patient’s employment status.
Intangible costs are the hardest to quantify and measure, as suitable instruments are lacking.
Traditionally, in health economic evaluations only the direct and indirect costs are included,
but there can be a huge difference in the calculation simply by including or excluding one
category of costs. (2, 12, 13)
Because it’s characterized by prolonged disability, indirect costs of productivity loss
(46%) and uncompensated care by family and household members (21%) represent the largest
component of the total burden (67%). Inpatient care costs, largely attributed to nursing home
care, are the biggest component of direct costs and account for 19.9% of total costs. The
smallest portion of Parkinson's disease cost falls on outpatient care (4%) and prescription
drugs (4–5%). (2, 13)
The public view in most countries is that the main medical expense is 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 from work. Early retirement adds a further 7% and premature
death an additional 7%. Therefore, nearly half of the total cost is not directly under the control
of neurologists.
In Bulgaria the average disability pension is 100 Euro per month (2010), according to
the database of the National Insurance Institute. The cost of an adequate treatment is about
150 – 200 Euro per month, the National Health insurance Fund pays 25%, so we could
conclude that the pension do not cover the treatment, not to mention the cost of food,
overhead costs, clothing and footwear.
It should be noted that in the future we need to create a unified register of patients with
Parkinson's, which would include indicators of health status, treatment, disability, quality of
life, help needs (in their quantity and value terms). Only in this way we could give an accurate
answer to the question what is the economic and social burden of Parkinson's.
Patients with Parkinson's disease are forced to make adjustments in their lifestyle and
career. They may no longer be able to enjoy the same hobbies or athletics, for example.
Therefore, lifestyle changes require assessment on what is important about their current
lifestyle, what can be adjusted, and what has to be completely changed. Lifestyle
modifications can be a result of changes in employment, finances, and disability. Oftentimes,
patients with earlyonset Parkinson's disease do not have to make adjustments in their normal
work habits or routines. This changes as the disease progresses, and patients may need to
assess what they can realistically continue to do and what needs to be modified. (1, 8)
Clinicians recommend that patients analyze their work environment, job duties, performance
standards, job complexity, and type of work to get a better understanding of what adjustments
can be considered. (6)
Parkinson's disease raises many concerns for caregivers, whether it is a spouse,
partner, or another family member. The caregivers worry about the future, the risk of
disability, job and economic loss, and increased dependence. These concerns and the burden
of responsibilities can cause anxiety and depression in caregivers. Oftentimes family members
are regularly involved in care, becoming the primary caregivers; they are supported by home
healthcare nursing, physicians, and specialized therapists as the disease progresses. (15)
Patients with Parkinson's disease go from being healthy individuals to being patients
with a chronic progressive illness. In early diagnosis, patients often deal with more
psychological issues, compared with physical problems. Adapting to the illness is difficult for
patients because they know they will never return to their pre-illness state.
As the disease progresses, patients may experience difficulty in adjusting
psychologically to the challenges that Parkinson's disease may present. These difficulties
include social withdrawal, hypersensitivity, frustration, and anger. Depression is the most
common psychiatric complication of the disease, affecting 40% to 70% of Parkinson's disease
patients. (1, 3, 7)
It is one of the most important factors impacting quality of life. The frequency of
depression has two modes of distribution, peaking in early-onset mild disease and then again
in advanced severe disease. (7) It has been estimated that the incidence of anxiety in
Parkinson's disease patients is 25%, but greater in patients who also are depressed. Usually,
anxiety will manifest after the diagnosis of Parkinson's disease, but may appear prior to motor
symptoms.
As no cure for Parkinson's disease is available, opinion leaders have emphasized the
need to make the improvement of Quality of Life a major objective of treatment in early as
well as advanced stages of the disease. (7) In this regard, the impact of non-motor symptoms
on Quality of Life warrants greater attention than in the past, even while attention to motor
symptoms is maintained. Furthermore, consideration should be given to the potential positive
or negative effects of Parkinson's disease treatments, as well as of the symptoms, on Quality
of Life when weighing the risks and benefits of management strategies for individual patients.
Therapies capable of delaying disease progression would be expected to have favorable
effects on both Quality of Life and the economic burden of Parkinson's disease. (7)

Conclusion
Motor and non-motor symptoms of Parkinson's disease can affect quality of life of
patients, especially with advancing disease and worsening symptoms. Parkinson's disease is
very individual and different patients have different symptoms. However, it is a progressive
disease without definitive treatment and with time the symptoms gradually worsened. As soon
as possible after the early symptoms of Parkinson's disease are observed, it is necessary to
seek medical advice as there is evidence that early treatment may delay disease progression
and prolong its good quality of life.
The diagnosis of Parkinson's disease is difficult to be accepted by many people, so
they postpone by fear their visit to the doctor. However, if action is taken in the early stages of
the disease the most appropriate treatment may be applied. This will give people the best
opportunity to control symptoms and delay progression of the disease.
Overall cost estimates for Parkinson’s disease vary from country to country. In
Bulgaria, the study of treatment costs and economic burden of disease is difficult due to lack
of accurate, adequate and timely information. Parkinson's disease is an expensive disorder, a
fact that must be faced by both the medical community and patients to ensure that enough
funding is available for suitable and innovative treatments. The indirect costs associated with
Parkinson’s disease are greater than the direct costs: roughly 50% of the latter are accounted
for by the cost of the drugs themselves. The economic burden of the disease increases
dramatically as the condition progresses and people with Parkinson’s use more healthcare
resources as symptoms become more severe. Disease severity is the most important factor
driving the cost of care, for example, direct costs for drug therapy increases significantly with
clinical progression of symptoms.

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Address for correspondance: Assoc.Prof. Jasmine Pavlova, MD

Vice dean
Faculty of Public Health, Medical University – Sofia
jpavlova@abv.bg
Bialo more str. 8, fl. 5
Sofia, 1527
Bulgaria