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Epidemiology and burden
Parkinson’s disease
1
Prevalence of Parkinson’s disease
2
Parkinson’s disease is a widespread public health issue
• PD is recognised as the second-most common
neurodegenerative disorder1
• Approximately 6 million people are diagnosed
with Parkinson’s disease (PD) worldwide2,3
• In Europe, there are an estimated
1.2 million people with PD3
• PD affects 1–2 per 1,000 of the population4,5
• PD affects 1% of the population over the age of
60, but is rare in individuals younger than 50
years4,6
• The prevalence of PD rises with age, and in the
oldest age groups, PD reaches a prevalence of
approximately 4%4,7
3
1. Bertram & Tanzi. J Clin Invest 2005;115(6):1449–1457;
2. European Parkinson’s Disease Association website. Accessed Feb 2017;
3. GBD 2015. Lancet 2016;388:1545–602; 4. Tysnes & Storstein. J Neural Transm 2017;124:901–905;
5. von Campenhausen et al. Eur Neuropsychopharmacol 2005;15(4):473–490; 6. de Lau & Breteler. Lancet Neurol 2006;5(6):525–535;
7. Zou et al. Eur Rev Med Pharmacol Sci 2014;18(24):3908–3915; 8. Andlin-Sobocki et al. Eur J Neurol 2005;12(Suppl 1):1–27
Cost per case of specific brain disorders in Europe8
Parkinson’s disease
Affective disorders
40,000
30,000
20,000
10,000
0
Cost per patient (€)
Multiple sclerosis
Tumour
Stroke
Dementia
Psychotic disorder
Epilepsy
Trauma
Addiction
Anxiety disorders
Migraine
Prevalence of Parkinson’s disease in the USA
• Prevalence describes the
number of people with a given
condition at a given time (often
expressed per 100,000 people)1
• Incidence rates describe the
number of new cases of a given
condition arising over a given
time, usually per year, often
expressed per 100,000 people1
4
• Estimates vary, but there are
approximately 1 million people in
the USA living with PD2
• The incidence rate in the USA has
been approximated to be 13.4 per
100,0003
• This rate rises rapidly over the age
of 60 years3
1. Oxford Concise Medical Dictionary. 2007;
2. Michael J. Fox foundation website. Accessed Feb 2017;
3. Van Den Eeden et al. Am J Epidemiol 2003;157(11):1015–1022
Prevalence of Parkinson’s disease in Europe
• A meta-analysisa comparing
studies estimating the prevalence
of PD in various European
countries gave prevalence rates of
108–257 per 100,000 people1
• When considering only older
people (>60 years old) this rate
increased to 1,280–1,500 per
100,000 people1
5
• This meta-analysis identified
several problems which may give
rise to the variation in estimates:1
• Differences in methodology
• Differences in diagnostic criteria
• Differences in the type and design of
the surveys
• Variations in age categories (i.e., some
surveys stop at >75 years whereas
some stop at >90 years old)
aA meta-analysis is a study using data from several other studies
1. von Campenhausen et al. Eur Neuropsychopharmacol 2015;15:473–490
The prevalence of PD is difficult to measure; however, the disease
is more commonly found in older individuals
Prevalence of Parkinson’s disease in China
6
1. Zou et al. Eur Rev Med Pharmacol Sci 2014;18(24):3908–3915
29 provinces, China, 1991
Zou et al. 2014 China survey
Three cities, China, 2005
Keelung, Taiwan, 2009
Ilan county, Taiwan, 2001
The prevalence of PD in China
continues to rise after 80
years of age; the overall rates
are similar to other countries
and regions1
55 60 65 70 75 80 85 90 95
Age (years)
5
4
3
1
2
0
Prevalence
(%)
Comparison of age-specific prevalence of PD in
community-based surveys in China (adapted from Zou et al., 20141)
Prevalence of Parkinson’s disease by age
• In a meta-analysis of worldwide
data, the prevalence of PD
increased with age, from 41 per
100,000 people in individuals
40–49 years to 1,903 per 100,000
people in individuals ≥801
• Comparing regions of the world,
Asia had a lower prevalence than
other areas at all ages studied1
7
1. Pringsheim et al. Movement Dis 2014;29(13):1583–1590
Prevalence of PD by age and geographic location
(per 100,000 people)1
Location
Age range (years)
50–59 60–69 70–79 80+
South America 228 637 2,180 6,095
Europe/
North America/
Australia
113 540 1,602 2,953
Asia 88 376 646 1,418
Prevalence of Parkinson’s disease by sex
• In a meta-analysis of worldwide
data, in the 50–59 age group,
males had a significantly increased
prevalence of PD of 134 per
100,000 people relative to females,
with a prevalence of PD of 41 per
100,000 people (p<0.05)1
8
1. Pringsheim et al. Movement Dis 2014;29(13):1583–1590
Prevalence of PD by sex and geographic location
(per 100,000 people)1
Location Female Male
South America 808 1,267
Europe/
North America/
Australia
1,267 1,535
Asia 306 371
The prevalence of PD was greater
amongst men than women1
Predictions of the increase in Parkinson’s disease prevalence
• Based on an analysis of epidemiological
data in Western Europe’s 5 most and the
world’s 10 most populous nations,a it was
estimated that the prevalence of PD in
individuals over 50 years of age would rise
from 4.1 million people in 2005, to 8.7
million people by 20301
• The burden of PD is expected to grow
substantially, and to become increasingly
concentrated outside the Western world1
9
aEurope: Germany, France, UK, Italy and Spain
The world: China, India, USA, Indonesia, Brazil, Pakistan, Bangladesh, Russia, Nigeria, Japan
1. Dorsey et al. Neurology 2007;68(5):384–386
The predicted increased prevalence of PD in
individuals over 50 years old1
Year
2005
5
4
3
1
2
0
Number
of
individuals
with
PD
(millions)
2010 2015 2020 2025 2030
China
Europe
Risk factors associated with Parkinson’s disease
10
aStrongest evidence for ibuprofen, for other NSAIDs the evidence is mixed or poor;1,2 NSAID=nonsteroidal anti-inflammatory drug
1. Lee & Gilbert. Neurol Clin 2016;34(4):955–965;
2. Ascherio & Schwarzschild. Lancet Neurol 2016;15(12):1257–1272
The risk of developing PD is a balance of the effect of positive and negative
factors on the genetic predisposition of an individual2
Risk factors1,2
• Age
• Sex
• Genetics
• Pesticide exposure
• Dairy
• Melanoma
• Traumatic brain injury
Protective factors1,2
• Smoking/tobacco use
• Caffeine
• Urate
• Physical activity
• NSAIDsa
• Calcium channel blockers
The burden of Parkinson’s disease
11
The economic burden of Parkinson’s disease
• In a study estimating the economic
burden of PD in the USA between
1999–2002:1
• Direct costs: $10,349 per patient
• Indirect costs: $25,326 per patient
• Total cost to the US: $23.0 billion per
year
• Outpatient care and drug costs
accounted for a relatively small
proportion of the economic burden1
12
1. Huse et al. Mov Disord 2005;20(11):1449–1454
Breakdown of PD-related costs1
By far the largest share of
the cost (49.4% of the total)
is due to productivity loss1
Productivity loss
49.4%
Uncompensated
care
18.8%
Inpatient care
19.9%
Outpatient
care
7.5%
Prescription
drugs
4.4%
The indirect costs of Parkinson’s disease
• Indirect costs are the expenses
incurred from the cessation or
reduction of work productivity as a
result of the morbidity and mortality
associated with a given disease1
• Indirect costs include:1,2
• Work loss
• Worker loss and replacement
• Lost/reduced productivity
• Absenteeism (habitual absence from
work)
13
• In one analysis within the USA, the
indirect costs of PD represented
45% of the total excess costsa
within the first year after diagnosis2
• In several studies analysing the
costs of PD, the indirect costs were
greater than the direct costs3-5
aExcess costs defined as costs incurred by patients with PD minus the total incurred by a control population
1. Boccuzzi. In: Cardiovascular Health Care Economics. 2003;
2. Johnson et al. Pharmacoeconomics 2013;31(9):779–806; 3. Martinez-Martín et al. PLoS One 2015;10(12):e0145310;
4. Huse et al. Mov Disord 2005;20:1449–1454; 5. Boland & Stacy. Am J Manag Care 2012;18(7 Suppl):S168–175
The costs of hospitalisation
0
1,000
2,000
3,000
4,000
5,000
<65 65–74 75–84 >85
Age (years)
National Health System
Social services
Private expenditure
In the English National Health
System, an analysis of hospital
admissions between April 2009
and March 2013 showed:1
• 324,055 PD-related hospital
admissions
• The costs of non-elective
PD-related hospital admissions
totalled £777 million
• These costs were driven largely
by admissions for pneumonia or
for PD itself
1. Low et al. Parkinsonism Relat Disord 2015;21(5):449–454;
2. Findley. Parkinsonism Relat Disord 2007;13:S8–S12;
3. Findley et al. Mov Disord 2003;18(10):1139–1145
Direct costs of PD in the UK2,3
Cost
of
PD
per
patient
per
year
(£)
14
The increasing economic burden of Parkinson’s disease
0
1,000
2,000
3,000
4,000
0 1 2 3 4
Costs
(€)
Years
Indirect costs
Direct costs
15
• An analysis within the Spanish
health system estimated the costs
of PD during 4 years1
• Direct costs increased by 52% from
year 1–41
• Indirect costs increased by 129%1
1. Martinez-Martín et al. PLoS One 2015;10(12):e0145310
Costs of PD over 4 years
Costs increased with the
progression and the severity
of the disease1
The predicted burden of Parkinson’s disease in the future
0
2
4
6
8
10
2010 2020 2030 2040 2050
Medical
cost
of
PD
(in
2010
billion
$)
Year
Self/family Commerical
Medicaid/public Medicare
• In 2010, an estimated 630,000 people in the
United States had clinically-diagnosed PD1
• Population projections suggest that the
number of people diagnosed with PD will
increase to 1.34 million by 20501
• This translates to an increase in medical
costs from an estimated $8 billion in 2010
to >$18 billion in 20501
Medicaid=a US programme that helps with medical costs for some people with limited income;2
Medicare=a US programme that pays for hospital and medical care for elderly and certain disabled Americans;2
Commercial=money paid by commercial health insurance agencies1
1. Kowal et al. Mov Disord 2013;28(3):311–318; 2. Medicare website. https://www.medicare.gov/. Accessed Mar 2017
Medical costs of PD over time1
The prevalence of PD in the USA is likely
to double between 2010 and 20401
16
The burden of Parkinson’s disease on the patient
• PD has a substantial impact on quality of life, driven by:
• Motor symptoms1
• Non-motor symptoms such as depression – roughly half of patients with PD suffer from some
form of depression, but this is typically under-treated1,2
• Treatment-related side effects and complications – e.g., psychosis, excessive daytime
somnolence, impulse control disorders, dyskinesia, and motor fluctuations3,4
• In studies of US veterans:
• Health-related quality of life scores among patients with PD were found to be lower than for all
other diseases studieda – except spinal cord injury and depression2
• Scores on the UPDRS (Unified Parkinson’s Disease Rating Scale; a scale which measures the
severity of PD) correlated with quality of life indices5
17
aIncluding congestive heart failure, stroke, chronic low back pain, arthritis, diabetes, and angina/coronary heart disease
1. Boland & Stacy. Am J Manag Care 2012;18(7 Suppl):S168–175; 2. Gage et al. J Neurol Neurosurg Psychiatry 2003;74(2):163–169;
3. Jankovic & Aguilar. Neuropsychiatr Dis Treat 2008;4(4):743–757; 4. Chapuis et al. Mov Disord 2005;20(2):224–230;
5. Kleiner-Fisman et al. Health Qual Life Outcomes 2010;8:91
The burden of non-motor symptoms on the patient
• Neuropsychiatric symptoms, including
depression, anxiety, apathy, fatigue and
psychosis (hallucinations and/or delusions) are
common in patients with PD1
• A questionnaire study assayed the effect of
non-motor symptoms on quality of life for
patients with PD2
• Many non-motor symptoms correlated with
quality of life scores:2
• Depression
• Anxiety
• Impaired concentration
• Memory complaints
• Sleep disturbance
18
PDQ=Parkinson’s Disease Quality of Life Questionnaire
1. Aarsland et al. Mov Disord 2009;24(15):2175-2186; 2. Duncan et al. Mov Disord 2014;29(2):195–202
Correlation between non-motor symptoms
and quality of life scores
(adapted from Duncan et al., 20142)
There was a significant correlation between the total number of
non-motor symptoms reported and quality of life2
Worsening
score
on
the
PD
Quality
of
Life
Questionnaire
Increasing number of
non-motor symptoms
The burden of Parkinson’s disease on caregivers
• Caregivers of patients with PD are
almost always relatives, and are
often elderly1
• Caring for a patient with PD places
a considerable burden on the
caregiver1
• Caregiver burdens include:2
• Health problems
• Modification of habits
• Economic loss
• Deterioration of quality of life
19
1. Peters. Focus on PD 2014;24(1):44–48;
2. Martinez-Martin et al. Expert Rev Pharmacoecon Outcomes Res 2012;12(2):221–230;
3. Aarsland et al. J Neurol Neurosurg Psychiatry 2007;78(1):36–42
• Disability
• PD symptoms
• Disease duration
• Higher medical
costs
• Gait impairment
• Use of
antidepressants
• Postural instability
and falls
• Quality of life
• Motor symptoms
• Medical
comorbidities
• Neuropsychiatric
symptoms
(including cognitive
impairment,
psychosis, apathy,
depression, and
impulse control
disorders)3
Patient-related variables that impact on
the caregiver:1
The burden of the cognitive symptoms of Parkinson’s disease on caregivers
• The level of cognitive functioning of patients can pose particular
challenges to the caregivers of patients with PD1
• One study showed that individuals who are more cognitively impaired
place a greater burden on caregivers:1
• The poorest quality of life was reported by caregivers of patients with PD dementia
• Impairments to a patient’s attention, memory, and executive function (e.g., the ability to plan and
solve problems) showed a strong relationship with caregiver burden
• Attentional deficits were the strongest predictor of caregiver quality of life compared with other
cognitive factors
• Loss of attention in patients with PD may lead to increased caregiver responsibilities
(to compensate for the attentional deficit), leading to reduced quality of life of the caregiver
20
1. Lawson et al. Int J Geriatr Psychiatry 2017;32(12):1362-1370
“
Parkinson’s disease is a disease
with growing prevalence and
negative effects on quality of life
21
Boland & Stacy. Am J Manag Care 2012;18(7 Suppl):S168–175

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parkinsons_disease_-_epidemiology_and_burden_updated.pptx

  • 3. Parkinson’s disease is a widespread public health issue • PD is recognised as the second-most common neurodegenerative disorder1 • Approximately 6 million people are diagnosed with Parkinson’s disease (PD) worldwide2,3 • In Europe, there are an estimated 1.2 million people with PD3 • PD affects 1–2 per 1,000 of the population4,5 • PD affects 1% of the population over the age of 60, but is rare in individuals younger than 50 years4,6 • The prevalence of PD rises with age, and in the oldest age groups, PD reaches a prevalence of approximately 4%4,7 3 1. Bertram & Tanzi. J Clin Invest 2005;115(6):1449–1457; 2. European Parkinson’s Disease Association website. Accessed Feb 2017; 3. GBD 2015. Lancet 2016;388:1545–602; 4. Tysnes & Storstein. J Neural Transm 2017;124:901–905; 5. von Campenhausen et al. Eur Neuropsychopharmacol 2005;15(4):473–490; 6. de Lau & Breteler. Lancet Neurol 2006;5(6):525–535; 7. Zou et al. Eur Rev Med Pharmacol Sci 2014;18(24):3908–3915; 8. Andlin-Sobocki et al. Eur J Neurol 2005;12(Suppl 1):1–27 Cost per case of specific brain disorders in Europe8 Parkinson’s disease Affective disorders 40,000 30,000 20,000 10,000 0 Cost per patient (€) Multiple sclerosis Tumour Stroke Dementia Psychotic disorder Epilepsy Trauma Addiction Anxiety disorders Migraine
  • 4. Prevalence of Parkinson’s disease in the USA • Prevalence describes the number of people with a given condition at a given time (often expressed per 100,000 people)1 • Incidence rates describe the number of new cases of a given condition arising over a given time, usually per year, often expressed per 100,000 people1 4 • Estimates vary, but there are approximately 1 million people in the USA living with PD2 • The incidence rate in the USA has been approximated to be 13.4 per 100,0003 • This rate rises rapidly over the age of 60 years3 1. Oxford Concise Medical Dictionary. 2007; 2. Michael J. Fox foundation website. Accessed Feb 2017; 3. Van Den Eeden et al. Am J Epidemiol 2003;157(11):1015–1022
  • 5. Prevalence of Parkinson’s disease in Europe • A meta-analysisa comparing studies estimating the prevalence of PD in various European countries gave prevalence rates of 108–257 per 100,000 people1 • When considering only older people (>60 years old) this rate increased to 1,280–1,500 per 100,000 people1 5 • This meta-analysis identified several problems which may give rise to the variation in estimates:1 • Differences in methodology • Differences in diagnostic criteria • Differences in the type and design of the surveys • Variations in age categories (i.e., some surveys stop at >75 years whereas some stop at >90 years old) aA meta-analysis is a study using data from several other studies 1. von Campenhausen et al. Eur Neuropsychopharmacol 2015;15:473–490 The prevalence of PD is difficult to measure; however, the disease is more commonly found in older individuals
  • 6. Prevalence of Parkinson’s disease in China 6 1. Zou et al. Eur Rev Med Pharmacol Sci 2014;18(24):3908–3915 29 provinces, China, 1991 Zou et al. 2014 China survey Three cities, China, 2005 Keelung, Taiwan, 2009 Ilan county, Taiwan, 2001 The prevalence of PD in China continues to rise after 80 years of age; the overall rates are similar to other countries and regions1 55 60 65 70 75 80 85 90 95 Age (years) 5 4 3 1 2 0 Prevalence (%) Comparison of age-specific prevalence of PD in community-based surveys in China (adapted from Zou et al., 20141)
  • 7. Prevalence of Parkinson’s disease by age • In a meta-analysis of worldwide data, the prevalence of PD increased with age, from 41 per 100,000 people in individuals 40–49 years to 1,903 per 100,000 people in individuals ≥801 • Comparing regions of the world, Asia had a lower prevalence than other areas at all ages studied1 7 1. Pringsheim et al. Movement Dis 2014;29(13):1583–1590 Prevalence of PD by age and geographic location (per 100,000 people)1 Location Age range (years) 50–59 60–69 70–79 80+ South America 228 637 2,180 6,095 Europe/ North America/ Australia 113 540 1,602 2,953 Asia 88 376 646 1,418
  • 8. Prevalence of Parkinson’s disease by sex • In a meta-analysis of worldwide data, in the 50–59 age group, males had a significantly increased prevalence of PD of 134 per 100,000 people relative to females, with a prevalence of PD of 41 per 100,000 people (p<0.05)1 8 1. Pringsheim et al. Movement Dis 2014;29(13):1583–1590 Prevalence of PD by sex and geographic location (per 100,000 people)1 Location Female Male South America 808 1,267 Europe/ North America/ Australia 1,267 1,535 Asia 306 371 The prevalence of PD was greater amongst men than women1
  • 9. Predictions of the increase in Parkinson’s disease prevalence • Based on an analysis of epidemiological data in Western Europe’s 5 most and the world’s 10 most populous nations,a it was estimated that the prevalence of PD in individuals over 50 years of age would rise from 4.1 million people in 2005, to 8.7 million people by 20301 • The burden of PD is expected to grow substantially, and to become increasingly concentrated outside the Western world1 9 aEurope: Germany, France, UK, Italy and Spain The world: China, India, USA, Indonesia, Brazil, Pakistan, Bangladesh, Russia, Nigeria, Japan 1. Dorsey et al. Neurology 2007;68(5):384–386 The predicted increased prevalence of PD in individuals over 50 years old1 Year 2005 5 4 3 1 2 0 Number of individuals with PD (millions) 2010 2015 2020 2025 2030 China Europe
  • 10. Risk factors associated with Parkinson’s disease 10 aStrongest evidence for ibuprofen, for other NSAIDs the evidence is mixed or poor;1,2 NSAID=nonsteroidal anti-inflammatory drug 1. Lee & Gilbert. Neurol Clin 2016;34(4):955–965; 2. Ascherio & Schwarzschild. Lancet Neurol 2016;15(12):1257–1272 The risk of developing PD is a balance of the effect of positive and negative factors on the genetic predisposition of an individual2 Risk factors1,2 • Age • Sex • Genetics • Pesticide exposure • Dairy • Melanoma • Traumatic brain injury Protective factors1,2 • Smoking/tobacco use • Caffeine • Urate • Physical activity • NSAIDsa • Calcium channel blockers
  • 11. The burden of Parkinson’s disease 11
  • 12. The economic burden of Parkinson’s disease • In a study estimating the economic burden of PD in the USA between 1999–2002:1 • Direct costs: $10,349 per patient • Indirect costs: $25,326 per patient • Total cost to the US: $23.0 billion per year • Outpatient care and drug costs accounted for a relatively small proportion of the economic burden1 12 1. Huse et al. Mov Disord 2005;20(11):1449–1454 Breakdown of PD-related costs1 By far the largest share of the cost (49.4% of the total) is due to productivity loss1 Productivity loss 49.4% Uncompensated care 18.8% Inpatient care 19.9% Outpatient care 7.5% Prescription drugs 4.4%
  • 13. The indirect costs of Parkinson’s disease • Indirect costs are the expenses incurred from the cessation or reduction of work productivity as a result of the morbidity and mortality associated with a given disease1 • Indirect costs include:1,2 • Work loss • Worker loss and replacement • Lost/reduced productivity • Absenteeism (habitual absence from work) 13 • In one analysis within the USA, the indirect costs of PD represented 45% of the total excess costsa within the first year after diagnosis2 • In several studies analysing the costs of PD, the indirect costs were greater than the direct costs3-5 aExcess costs defined as costs incurred by patients with PD minus the total incurred by a control population 1. Boccuzzi. In: Cardiovascular Health Care Economics. 2003; 2. Johnson et al. Pharmacoeconomics 2013;31(9):779–806; 3. Martinez-Martín et al. PLoS One 2015;10(12):e0145310; 4. Huse et al. Mov Disord 2005;20:1449–1454; 5. Boland & Stacy. Am J Manag Care 2012;18(7 Suppl):S168–175
  • 14. The costs of hospitalisation 0 1,000 2,000 3,000 4,000 5,000 <65 65–74 75–84 >85 Age (years) National Health System Social services Private expenditure In the English National Health System, an analysis of hospital admissions between April 2009 and March 2013 showed:1 • 324,055 PD-related hospital admissions • The costs of non-elective PD-related hospital admissions totalled £777 million • These costs were driven largely by admissions for pneumonia or for PD itself 1. Low et al. Parkinsonism Relat Disord 2015;21(5):449–454; 2. Findley. Parkinsonism Relat Disord 2007;13:S8–S12; 3. Findley et al. Mov Disord 2003;18(10):1139–1145 Direct costs of PD in the UK2,3 Cost of PD per patient per year (£) 14
  • 15. The increasing economic burden of Parkinson’s disease 0 1,000 2,000 3,000 4,000 0 1 2 3 4 Costs (€) Years Indirect costs Direct costs 15 • An analysis within the Spanish health system estimated the costs of PD during 4 years1 • Direct costs increased by 52% from year 1–41 • Indirect costs increased by 129%1 1. Martinez-Martín et al. PLoS One 2015;10(12):e0145310 Costs of PD over 4 years Costs increased with the progression and the severity of the disease1
  • 16. The predicted burden of Parkinson’s disease in the future 0 2 4 6 8 10 2010 2020 2030 2040 2050 Medical cost of PD (in 2010 billion $) Year Self/family Commerical Medicaid/public Medicare • In 2010, an estimated 630,000 people in the United States had clinically-diagnosed PD1 • Population projections suggest that the number of people diagnosed with PD will increase to 1.34 million by 20501 • This translates to an increase in medical costs from an estimated $8 billion in 2010 to >$18 billion in 20501 Medicaid=a US programme that helps with medical costs for some people with limited income;2 Medicare=a US programme that pays for hospital and medical care for elderly and certain disabled Americans;2 Commercial=money paid by commercial health insurance agencies1 1. Kowal et al. Mov Disord 2013;28(3):311–318; 2. Medicare website. https://www.medicare.gov/. Accessed Mar 2017 Medical costs of PD over time1 The prevalence of PD in the USA is likely to double between 2010 and 20401 16
  • 17. The burden of Parkinson’s disease on the patient • PD has a substantial impact on quality of life, driven by: • Motor symptoms1 • Non-motor symptoms such as depression – roughly half of patients with PD suffer from some form of depression, but this is typically under-treated1,2 • Treatment-related side effects and complications – e.g., psychosis, excessive daytime somnolence, impulse control disorders, dyskinesia, and motor fluctuations3,4 • In studies of US veterans: • Health-related quality of life scores among patients with PD were found to be lower than for all other diseases studieda – except spinal cord injury and depression2 • Scores on the UPDRS (Unified Parkinson’s Disease Rating Scale; a scale which measures the severity of PD) correlated with quality of life indices5 17 aIncluding congestive heart failure, stroke, chronic low back pain, arthritis, diabetes, and angina/coronary heart disease 1. Boland & Stacy. Am J Manag Care 2012;18(7 Suppl):S168–175; 2. Gage et al. J Neurol Neurosurg Psychiatry 2003;74(2):163–169; 3. Jankovic & Aguilar. Neuropsychiatr Dis Treat 2008;4(4):743–757; 4. Chapuis et al. Mov Disord 2005;20(2):224–230; 5. Kleiner-Fisman et al. Health Qual Life Outcomes 2010;8:91
  • 18. The burden of non-motor symptoms on the patient • Neuropsychiatric symptoms, including depression, anxiety, apathy, fatigue and psychosis (hallucinations and/or delusions) are common in patients with PD1 • A questionnaire study assayed the effect of non-motor symptoms on quality of life for patients with PD2 • Many non-motor symptoms correlated with quality of life scores:2 • Depression • Anxiety • Impaired concentration • Memory complaints • Sleep disturbance 18 PDQ=Parkinson’s Disease Quality of Life Questionnaire 1. Aarsland et al. Mov Disord 2009;24(15):2175-2186; 2. Duncan et al. Mov Disord 2014;29(2):195–202 Correlation between non-motor symptoms and quality of life scores (adapted from Duncan et al., 20142) There was a significant correlation between the total number of non-motor symptoms reported and quality of life2 Worsening score on the PD Quality of Life Questionnaire Increasing number of non-motor symptoms
  • 19. The burden of Parkinson’s disease on caregivers • Caregivers of patients with PD are almost always relatives, and are often elderly1 • Caring for a patient with PD places a considerable burden on the caregiver1 • Caregiver burdens include:2 • Health problems • Modification of habits • Economic loss • Deterioration of quality of life 19 1. Peters. Focus on PD 2014;24(1):44–48; 2. Martinez-Martin et al. Expert Rev Pharmacoecon Outcomes Res 2012;12(2):221–230; 3. Aarsland et al. J Neurol Neurosurg Psychiatry 2007;78(1):36–42 • Disability • PD symptoms • Disease duration • Higher medical costs • Gait impairment • Use of antidepressants • Postural instability and falls • Quality of life • Motor symptoms • Medical comorbidities • Neuropsychiatric symptoms (including cognitive impairment, psychosis, apathy, depression, and impulse control disorders)3 Patient-related variables that impact on the caregiver:1
  • 20. The burden of the cognitive symptoms of Parkinson’s disease on caregivers • The level of cognitive functioning of patients can pose particular challenges to the caregivers of patients with PD1 • One study showed that individuals who are more cognitively impaired place a greater burden on caregivers:1 • The poorest quality of life was reported by caregivers of patients with PD dementia • Impairments to a patient’s attention, memory, and executive function (e.g., the ability to plan and solve problems) showed a strong relationship with caregiver burden • Attentional deficits were the strongest predictor of caregiver quality of life compared with other cognitive factors • Loss of attention in patients with PD may lead to increased caregiver responsibilities (to compensate for the attentional deficit), leading to reduced quality of life of the caregiver 20 1. Lawson et al. Int J Geriatr Psychiatry 2017;32(12):1362-1370
  • 21. “ Parkinson’s disease is a disease with growing prevalence and negative effects on quality of life 21 Boland & Stacy. Am J Manag Care 2012;18(7 Suppl):S168–175

Editor's Notes

  1. Worldwide, PD is the second-most common neurodegenerative disorder, after Alzheimer’s disease.1 It is difficult to estimate the total number of people in the world who are affected by PD, as the methods used to collect this data differ between countries.2 The European Parkinson Disease Association has proposed a current estimate of approximately 6 million people with PD, worldwide.3 The prevalence of PD is likely to increase substantially over the next few decades.4 It has been predicted that, by 2030, the global prevalence of PD is expected to more than double, to between 8.7 million and 9.3 million individuals.4 The fact that PD is a prevalent disease that is costly to manage, means that it has become an important public health issue.4   References: 1. Tanner CM, Goldman SM. Epidemiology of Parkinson’s disease. Neurol Clin 1996; 14 (2): 317–335. 2. Hirtz D, Thurman DJ, Gwinn-Hardy K, et al. How common are the “common” neurologic disorders? Neurology 2007; 68 (5): 326–337. 3. European Parkinson’s Disease Association website. http://www.epda.eu.com. Accessed February 2017. 4. Dorsey ER, Constantinescu R, Thompson JP, et al. Projected number of people with Parkinson disease in the most populous nations, 2005 through 2030. Neurology 2007; 68 (5): 384–386.   Other references used on slide: Andlin-Sobocki P, Jönsson B, Wittchen HU, Olesen J. Cost of disorders of the brain in Europe. Eur J Neurol 2005; 12 (Suppl 1): 1–27. Bertram L, Tanzi RE. The genetic epidemiology of neurodegenerative disease. J Clin Invest 2005; 115 (6): 1449–1457. de Lau LML, Breteler MMB. Epidemiology of Parkinson’s disease. Lancet Neurol 2006; 5: 525–535. GBD 2015 Disease and Injury Incidence and Prevalence Collaborators. Global, regional, and national incidence, prevalence, and years lived with disability for 310 diseases and injuries, 1990-2015: a systematic analysis for the Global Burden of Disease Study 2015. Lancet 2016; 388 (10053): 1545–1602. Tysnes OB, Storstein A. Epidemiology of Parkinson’s disease. J Neural Transm 2017; 124: 901–905. von Campenhausen S, Bornschein B, Wick R, et al. Prevalence and incidence of Parkinson’s disease in Europe. Eur Neuropsychopharmacol 2005; 15: 473–490. Zou YM, Tan JP, Li N, et al. The prevalence of Parkinson’s disease continues to rise after 80 years of age: a cross-sectional study of Chinese veterans. Eur Rev Med Pharmacol Sci 2014; 18 (24): 3908–3915.
  2. The Michael J. Fox Foundation for Parkinson’s Research (a leading US charity) estimates that approximately 1 million individuals in the USA, are living with PD.1 A recent analysis of US Medicarea data showed an approximate 50% greater prevalence of PD in men than in women.2 In general, urban populations in the USA tend to have a higher prevalence of PD than rural populations, and data suggest that there may be a concentration of the disease in the Midwest and Northeast regions, compared to other regions.2 There is also evidence that PD is more prevalent in people of White ethnicity than in people of African-American or Asian origin.2 Incidence data are scarce, due to the low frequency of PD and the difficulties in establishing a clear diagnosis.3 The incidence rate in the USA is approximately 13.4 per 100,000 people, with only 4% of new cases arising in individuals <50 years old.3 Furthermore, the incidence rate for men is estimated to be higher than that for women, with the male:female ratio generally increasing with age.3   aMedicare is the US federal health insurance system for people aged ≥65 years, as well as for certain younger people with disabilities, and people with end-stage renal disease.   References: 1. Michael J. Fox Foundation for Parkinson’s Research website. http://www.michaeljfox.org. Accessed February 2017. 2. Wright Willis A, Evanoff BA, Lian M, et al. Geographic and ethnic variation in Parkinson disease: a population-based study of US Medicare beneficiaries. Neuroepidemiology 2010; 34 (3): 143–151. 3. Van Den Eeden SK, Tanner CM, Bernstein AL, et al. Incidence of Parkinson’s disease: variation by age, gender and race/ethnicity. Am J Epidemiol 2003; 157 (11): 1015–1022.   Other reference used on slide: Oxford Concise Medical Dictionary. Fourth Edition. © Oxford University Press, 2007.
  3. A meta-analysis estimated the prevalence of PD, using data collected by various studies of Western European countries between 1961 and 2000.1 Using the best quality evidence from these studies, the meta-analysis estimated a prevalence of approximately 108 to 257 per 100,000 people, when considering the entire age range.1 Estimated prevalence rates were much higher when the data from older populations were analysed.1 In individuals aged >60 years, the prevalence of PD was between 1,280 and 1,500 per 100,000 people.1 The study design and methodology used to estimate the prevalence of PD can affect a study’s results.1 For example, a study recruiting only residents from nursing homes (which are more likely to care for disabled residents) estimated a prevalence of 12,500 per 100,000 people.1,2 Different approaches to identifying cases of PD can also introduce variation between studies, particularly when non-expert clinicians are used for the initial screening of patients.1   References: 1. von Campenhausen S, Bornschein B, Wick R, et al. Prevalence and incidence of Parkinson’s disease in Europe. Eur Neuropsychopharmacol 2015; 15 (4): 473–490. 2. Evers S, Obladen M. Epidemiology and therapy of Parkinson disease in inpatient nursing homes. Z Gerontol 1994; 27 (4): 270–275.
  4. A multi-centre study in China reported that the prevalence of PD was 2.4% in Chinese veterans aged ≥60 years.1 This is comparable to the burden of PD in other developed, and developing countries.1 This observation is in contrast to an earlier study, which suggested that PD may be slightly less prevalent in Asia than in Western countries.2 However, this may have been due to methodological differences between the studies, as well as reduced survival rates, and limited access to healthcare in Asia compared to Western countries, as opposed to reflecting any real difference in the prevalence of PD.2 The Chinese study also showed that the prevalence of PD significantly increases with age, a trend also observed in other studies conducted in China, Europe, and the USA.1   References: 1. Zou YM, Tan JP, Li N, et al. The prevalence of Parkinson’s disease continues to rise after 80 years of age: a cross-sectional study of Chinese veterans. Eur Rev Med Pharmacol Sci 2014; 18 (24): 3908–3915. 2. Muangpaisan W, Hori H, Brayne C. Systematic review of the prevalence and incidence of Parkinson’s disease in Asia. J Epidemiol 2009; 19 (6): 281–293.
  5. The prevalence of PD increases with advancing age.1 In a meta-analysis of worldwide prevalence data, PD was found to be approximately 40 times more prevalent in populations aged ≥80 years than in those aged 40–49 years.2 Generally, PD is very rare in individuals <40 years old.3 Normally, the slow and progressive nature of PD means that patients tend to live with the disease for many years.4 Therefore, the prevalence of PD tends to be highest in the most elderly (i.e., ≥80 years of age).1,2 In one analysis, for Asia as a whole – including South Asia, South-East Asia and the Middle East – the overall prevalence of PD was lower, in those aged 70–79 years, than in Europe, North America, and Australia (646 per 100,000 versus 1,602 per 100,000, respectively).2   References: 1. Zou YM, Tan JP, Li N, et al. The prevalence of Parkinson’s disease continues to rise after 80 years of age: a cross-sectional study of Chinese veterans. Eur Rev Med Pharmacol Sci 2014; 18 (24): 3908–3915. 2. Pringsheim T, Jette N, Frolkis A, Steeves TDL. The prevalence of Parkinson’s disease: a systematic review and meta-analysis. Mov Disord 2014; 29 (13): 1583–1590. 3. Van Den Eeden SK, Tanner CM, Bernstein AL, et al. Incidence of Parkinson’s disease: variation by age, gender, and race/ethnicity. Am J Epidemiol 2003; 157 (11): 1015–1022. 4. Kulisevsky J, Luquin MR, Arbelo JM, et al. Advanced Parkinson’s disease: clinical characteristics and treatment (part I). Neurologia 2013; 28 (8): 503–521.
  6. Although there is strong evidence to indicate that a person is more likely to develop PD as they become older, the effect of gender is less clear-cut.1 A recent analysis of worldwide data found generally higher levels of PD in male populations.1 However, the differences were only statistically significant in one age group (50–59 years), and not in any of the other age groups, geographical regions, or overall.1 Consequently, the observed differences may be a result of variations in the study designs.2 Other evidence is more supportive of a greater risk of PD in men. A review of incidence data (i.e., showing the rates at which new cases of PD occur) found that men were more likely than women to develop PD.3 In another study, the difference between sexes was relatively small between the ages of 50 to 59 years, but became much larger, and more apparent, above 80 years.4   References: 1. Pringsheim T, Jette N, Frolkis A, Steeves TDL. The prevalence of Parkinson’s disease: a systematic review and meta-analysis. Mov Disord 2014; 29 (13): 1583–1590. 2. Burn DJ. Sex and Parkinson’s disease: a world of difference? J Neurol Neurosurg Psychiatry 2007; 78 (8): 787. 3. Wright Willis A, Evanoff BA, Lian M, et al. Geographic and ethnic variation in Parkinson disease: a population-based study of US Medicare beneficiaries. Neuroepidemiology 2010; 34 (3): 143–151. 4. Van Den Eeden SK, Tanner CM, Bernstein AL, et al. Incidence of Parkinson’s disease: variation by age, gender, and race/ethnicity. Am J Epidemiol 2003; 157 (11): 1015–1022.
  7. Life expectancy continues to grow in the world’s rapidly developing transitional countries, including in China.1 As survival rates improve, due to better economic conditions and healthcare, the prevalence of age-related chronic diseases (including PD), is expected to rise accordingly.2 A study that combined prevalence data for some of the world’s largest populations predicted that there will be approximately 8.7 million people living with PD by 2030, with nearly 5 million residing in China.3 This increase marks a likely geographical shift in the main burden of PD, from Western countries to those in the East.3   References: 1. United Nations. World population prospects: the 2015 revision. https://esa.un.org/unpd/wpp/. Accessed March 2015. 2. Yach D, Hawkes C, Gould CL, Hoffman KJ. The global burden of chronic diseases: overcoming impediments to prevention and control. JAMA 2004; 291 (21): 2616–2622. 3. Dorsey ER, Constantinescu R, Thompson JP, et al. Projected number of people with Parkinson disease in the most populous nations, 2005 through 2030. Neurology 2007; 68 (5): 384–386.
  8. Approximately 90% of PD cases are ‘sporadic’ or ‘idiopathic’, meaning that the cause is unknown.1 However, the disease is known to cluster in families, with <10% of patients reporting a family history of PD.1 Only five single genes have been discovered thus far that, by themselves, produce the clinical symptoms of PD.1,2 Other PD-related genes tend to have little effect by themselves, but may contribute to a substantial increase in overall risk when found together.2 At present, genetic screening can predict an individual case no better than knowing a person’s age, sex, smoking history, or parental history.3 Smokers tend to have a markedly lower risk of PD than non-smokers, and evidence exists to suggest that nicotine may be the component responsible for this protective effect.4 While this finding has led to nicotine being tested in clinical trials as a potential therapy for PD,4 smoking itself should never be considered as a useful preventive measure, since it remains the world’s leading cause of avoidable premature death.5 Urate is a biochemical end product of the metabolism of purines, that is normally present in the blood.4 There is convincing evidence to indicate that naturally higher levels of urate may protect against PD.4 While substances known to raise plasma urate levels (e.g., dietary fructose) have been associated with a reduced PD risk, those known to lower urate levels (e.g., dairy intake) have been associated with an increased risk of PD.4   References: 1. Thomas B, Beal MF. Parkinson’s disease. Hum Mol Genet 2007; 16 (R2): R183–R194. 2. Nalls MA, Pankratz N, Lill CM, et al. Large-scale meta-analysis of genome-wide association data identifies six new risk loci for Parkinson’s disease. Nat Genet 2014; 46 (9): 989–993. 3. Darweesh SKL, Verlinden VJA, Adams HHH, et al. Genetic risk of Parkinson’s disease in the general population. Parkinsonism Relat Disord 2016; 29: 54–59. 4. Ascherio A, Schwarzschild MA. The epidemiology of Parkinson’s disease: risk factors and prevention. Lancet Neurol 2016; 15 (12): 1257–1272. 5. Samet JM. Tobacco smoking: the leading cause of preventable disease worldwide. Thorac Surg Clin 2013; 23 (2): 103–112.   Other reference used on slide: Lee A, Gilbert RM. Epidemiology of Parkinson disease. Neurol Clin 2016; 34 (4): 955–965.
  9. The economic impact of PD to a healthcare system, and to society, can be considerable.1 A study in the USA estimated the costs associated with PD over approximately 4 years, using data from more than 20,000 patients who were diagnosed with the disease.1 The slide shows that the cost of inpatient/outpatient care, including prescription drugs (known as the ‘direct’ costs), accounted for 32% of the economic burden of PD.1 The major contributor to the economic burden of PD, was the combined costs associated with lost productivity,a and those associated with caring for someone with PD (known as the ‘indirect’ costs).1 These indirect costs reflect the nature of PD as a progressively disabling disease, rather than an acute illness.1 By extrapolating the total costs per patient to reflect the number of people in the USA with PD, the study revealed that caring for patients with PD costs approximately $23 billion USD per year.1 This economic burden is predicted to increase even further over the coming decades, as the proportion of older adults in the population increases.1   aLost productivity can be a result of absenteeism or reduced productivity in the workplace, and applies not only to the patient, but also to their caregiver who may have had to give up work to care for the person with PD.   Reference: 1. Huse DM, Schulman K, Orsini L, et al. Burden of illness in Parkinson’s disease. Mov Disord 2005; 20 (11): 1449–1454.
  10. Indirect costs were introduced on the previous slide and, in the study discussed, they were the main contributors to the overall economic burden of PD.1 The slide presents a general definition for the indirect costs of human disease and illness, further broken down into specific components.2,3 It is important to estimate indirect costs to provide an insight into the additional economic impact of a disease – beyond the more obvious costs associated with healthcare utilisation. In PD, indirect costs make up a considerable proportion of the overall cost, and can be greater than the direct costs.1,3,4 Given the progressively debilitating nature of PD, individuals may experience a gradual reduction in productivity in the workplace as their symptoms worsen, until they can no longer maintain a position of employment. In this instance, there is a cost to the individual through lost wages/income, but also to the employer resulting from reduced productivity/absenteeism.2 Mortality is also associated with indirect costs in terms of lost future earnings by those who die prematurely, and the cost to the employer to replace staff.2 Another aspect to consider is that, as a long-term illness, PD may have wider ‘indirect’ economic implications, such as work disability benefits, cost of caregiving, and loss of taxes to society.2   References: 1. Huse DM, Schulman K, Orsini L, et al. Burden of illness in Parkinson’s disease. Mov Disord 2005; 20 (11): 1449–1454. 2. Boccuzzi SJ. Indirect health care costs: an overview. In: Weintraub WS (ed). Contemporary Cardiology: Cardiovascular Health Care Economics. New York: Humana Press, 2003. 3. Johnson SJ, Kaltenboeck A, Diener MD, et al. Cost of Parkinson’s disease in a privately insured population. Pharmacoeconomics 2013; 31 (9): 779–806. 4. Martinez-Martín P, Rodriguez-Blazquez C, Paz S, et al. Parkinson symptoms and health related quality of life as predictors of costs: a longitudinal observational study with linear mixed model analysis. PLoS One 2015; 10 (12): e0145310.   Other reference used on slide: Boland DF, Stacy M. The economic and quality of life burden associated with Parkinson’s disease: a focus on symptoms. Am J Manag Care 2012; 18 (7 Suppl): S168–S175.
  11. Direct costs include those associated with the use of healthcare resources, such as inpatient/outpatient care, and drugs.1,2 A UK survey evaluated the costs associated with the use of healthcare services in 432 patients diagnosed with PD.2,3 Overall, the direct costs of PD care increased with advancing age, driven mainly by the worsening severity of symptoms.2,3 As PD progresses, patients may develop co-morbidities, requiring the use of additional healthcare resources.2 Many patients eventually enter residential/nursing home care, particularly those patients with advanced disease.2,3 Inpatient care is a major component of the direct costs of PD.1 These are mostly emergency admissions, leading to longer hospital stays when compared with age-matched individuals without PD.4   References: 1. Huse DM, Schulman K, Orsini L, et al. Burden of illness in Parkinson’s disease. Mov Disord 2005; 20 (11): 1449–1454. 2. Findley LJ. The economic impact of Parkinson’s disease. Parkinsonism Relat Disord 2007; 13: S8–S12. 3. Findley L, Aujla M, Bain PG, et al. Direct economic impact of Parkinson’s disease: a research survey in the United Kingdom. Mov Disord 2003; 18 (10): 1139–1145. 4. Low V, Ben-Shlomo Y, Coward E, et al. Measuring the burden and mortality of hospitalisation in Parkinson’s disease: a cross-sectional analysis of the English Hospital Episodes Statistics database 2009–2013. Parkinsonism Relat Disord 2015; 21 (5): 449–454.
  12. The previous slide showed that the direct costs of PD care increased over decades with advancing age, mainly due to worsening disease severity.1,2 Evidence from a study conducted within the Spanish healthcare system suggests that the increase in costs (direct and indirect) can be considerable, even in the earlier stages of PD.3 An association of increased cost with disease progression was reported; motor symptoms, cognitive impairment, and pain had a direct impact on cost.3   References: 1. Findley LJ. The economic impact of Parkinson’s disease. Parkinsonism Relat Disord 2007; 13: S8–S12. 2. Findley L, Aujla M, Bain PG, et al. Direct economic impact of Parkinson’s disease: a research survey in the United Kingdom. Mov Disord 2003; 18 (10): 1139–1145. 3. Martinez-Martín P, Rodriguez-Blazquez C, Paz S, et al. Parkinson symptoms and health related quality of life as predictors of costs: a longitudinal observational study with linear mixed model analysis. PLoS One 2015; 10 (12): e0145310.
  13. To help healthcare systems plan for the future, it is important to forecast the requirement for resources. The number of people diagnosed with PD in the USA is predicted to more than double in the 30-year period from 2010 to 2040, as are the associated costs.1 These increases reflect the growing numbers of elderly citizens in the US population,2 and also highlight the substantial increase in resources needed to manage the care of patients with PD in the coming years.2   References: 1. Kowal SL, Dall TM, Chakrabarti R, et al. The current and projected economic burden of Parkinson’s disease in the United States. Mov Disord 2013; 28 (3): 311–318. 2. Huse DM, Schulman K, Orsini L, et al. Burden of illness in Parkinson’s disease. Mov Disord 2005; 20 (11): 1449–1454. Other reference used on slide: Medicare website. https://www.medicare.gov/glossary/m.html. Accessed March 2017.
  14. The burden of PD is not confined to its economic impact; the disease also has a considerable detrimental effect on a patient’s quality of life (i.e., their general well-being). In patients with PD, quality of life can be affected from both a physical and mental health perspective by the classic motor symptoms of the disease, and by certain non-motor symptoms such as depression.1,2 There is evidence to suggest that quality of life is reduced with worsening disease severity, as patients gradually lose their independence and the ability to perform daily tasks.3   References: 1. Boland DF, Stacy M. The economic and quality of life burden associated with Parkinson’s disease: a focus on symptoms. Am J Manag Care 2012; 18 (7 Suppl): S168–S175. 2. Gage H, Hendricks A, Zhang S, Kazis L. The relative health related quality of life of veterans with Parkinson’s disease. J Neurol Neurosurg Psychiatry 2003; 74 (2): 163–169. 3. Kleiner-Fisman G, Stern MB, Fisman DN. Health-related quality of life in Parkinson disease: correlation between Health Utilities Index III and Unified Parkinson’s Disease Rating Scale (UPDRS) in U.S. male veterans. Health Qual Life Outcomes 2010; 8: 91. Other references used on slide: Chapuis S, Ouchchane L, Metz O, et al. Impact of the motor complications of Parkinson’s disease on the quality of life. Mov Disord 2005; 20 (2): 224–230. Jankovic J, Aguilar LG. Current approaches to the treatment of Parkinson’s disease. Neuropsychiatr Dis Treat 2008; 4 (4): 743–757.
  15. Non-motor symptoms of PD can be present for many years before the characteristic motor symptoms appear.1 These non-motor symptoms may affect an individual’s quality of life well before a formal diagnosis has been made.1 A study conducted in patients who were newly diagnosed with PD, found that their quality of life was reduced as the number of non-motor symptoms that were present increased.1 Screening for non-motor symptoms at the time of diagnosis may prompt appropriate intervention, and reduce their negative impact on the patient’s quality of life.1   Reference: 1. Duncan GW, Khoo TK, Yarnall AJ, et al. Health-related quality of life in early Parkinson’s disease: the impact of nonmotor symptoms. Mov Disord 2014; 29 (2): 195–202. Other reference used on slide: Aarsland D, Marsh L, Schrag A. Neuropsychiatric symptoms in Parkinson’s disease. Mov Disord 2009; 24 (15): 2175–2186.
  16. The progressive disabling effect of PD on an individual means that they will inevitably require some form of care, usually provided by a relative or friend.1,2 The caregiving role is all-encompassing as carers provide wide-ranging physical, emotional, and social support to people living with PD.1,2 As the disease progresses and patients gradually lose their ability to perform everyday tasks, such care becomes increasingly burdensome, and impacts greatly on a caregiver’s quality of life.1,2 Caregivers may suffer from stress and other health problems, experience financial difficulties, and feel that they are neglecting other areas of responsibility.1,2 In some cases, caregivers may feel that they can no longer look after a person with PD, and so the patient is placed in residential care.2 It is important to provide support and education to caregivers, so that they can maximise their own quality of life, and that of the patient for whom they care.1,2   References: 1. Peters M. Quality of life and burden in caregivers for patients with PD. Focus on PD 2014; 24 (1): 44–48. 2. Martinez-Martin P, Rodriguez-Blazquez C, Forjaz MJ. Quality of life and burden in caregivers for patients with Parkinson’s disease: concepts, assessment and related factors. Expert Rev Pharmacoecon Outcomes Res 2012; 12 (2): 221–230. Other reference used on slide: Aarsland D, Brønnick K, Ehrt U, et al. Neuropsychiatric symptoms in patients with Parkinson’s disease and dementia: frequency, profile and associated caregiver stress. J Neurol Neurosurg Psychiatry 2007; 78 (1): 36–42.
  17. There are many aspects of PD that can intensify the caregiver burden (e.g., impaired movement, sleep disorders, pain, cognitive impairment, etc.).1 Attentional deficits may have a negative impact on the ability of people with PD to perform basic everyday tasks, including physical and social activities.2 Consequently, caregivers may take on these responsibilities, further increasing the burden of care and reducing quality of life (which may already be considerably affected).2 Researchers are hoping to determine the effects of caring for a person with PD on the cognitive function of the caregiver, as well as the potential impact that any such impairment might have on both parties.2   References: 1. Martinez-Martin P, Rodriguez-Blazquez C, Forjaz MJ. Quality of life and burden in caregivers for patients with Parkinson’s disease: concepts, assessment and related factors. Expert Rev Pharmacoecon Outcomes Res 2012; 12 (2): 221–230. 2. Lawson RA, Yarnall AJ, Johnston F, et al. Cognitive impairment in Parkinson’s disease: impact on quality of life of carers. Int J Geriatr Psychiatry 2017; 32 (12): 1362–1370.
  18. Reference used on slide: Boland DF, Stacy M. The economic and quality of life burden associated with Parkinson’s disease: a focus on symptoms. Am J Manag Care 2012; 18 (7 Suppl): S168–S175.