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The Economic and Quality of Life Burden Associated With Parkinson's Disease: A Focus on Symptoms
Deborah F. Boland, DO, MSPT, and Mark Stacy, MD
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The Economic and Quality of Life Burden Associated With Parkinson's Disease: A Focus on Symptoms

Deborah F. Boland, DO, MSPT, and Mark Stacy, MD
Parkinson’s disease (PD) imposes a significant economic burden on the healthcare system. As the population continues to age and shifts to include a larger proportion of persons 65 years and older, the economic burden related to PD will continue to escalate. Clinicians should be mindful of striving for efficiency, making prudent choices, and allocating resources appropriately. The majority of treatment costs in PD are associated with advancing disease; specifically, the costs related to increasing need for care. Early identification of motor and non-motor signs and symptoms of disease allows for earlier treatment. Through early treatment strategies, symptom control is improved and patients will likely have less need for care. This leads to improvements in quality of life (QoL) and functional independence and reduced caregiver burden and thus results in decreased costs. In addition, although research thus far has not clearly demonstrated the ability of an agent to provide disease modification, as new, potentially neuroprotective therapeutic interventions are developed and become available as treatment options, the recognition of early disease will be more important. If earlier treatment with neuroprotective agents leads to slowing of disease progression, the result may be less need for care and decreased costs for patients with PD. This may have a measurable impact by improving QoL measures for both the patient and caregivers.

(Am J Manag Care. 2012;18:S168-S175)

The incidence and prevalence of Parkinson’s disease (PD) increase with age; with disease duration, both direct and indirect annual costs associated with this disorder will likewise continue to escalate. Given that the population of those 65 years and older is expected to increase from 35 to 80 million by 2040,intensive discussion will focus on healthcare economy, including efficiency, prudent choices by providers, and appropriate allocation of resources. It is anticipated that future treatment of patients with neurodegenerative diseases will require providers to optimize treatment with best available therapies, incorporate disease modification approaches (if available), and emphasize management of healthcare system resources by limiting both direct and indirect expenditures.

Among neurodegenerative diseases, PD especially is associated with a significant economic burden to both patients and society. Over an 8-year span from 1992 to 2000, Medicare beneficiaries with PD used more healthcare services in all categories and had more out-of-pocket expenses than those without this disorder.While likely due to multifactorial causes, cost of care continues to place an increasing burden on patients with PD, caregivers, and society. This article will address the increasing local and societal burdens associated with the progressive disabilities of PD and will review potential strategies for patient care in an increasingly demanding, cost management–focused environment.

Clinical Features

All clinicians regardless of specialty should have some familiarity with motor and non-motor symptoms related to PD. The 4 cardinal features of PD are well known. Jankovic presented the acronym TRAP in a review paper of the clinical features of PD: Tremor at rest, Rigidity, Akinesia or bradykinesia, and Postural Instability.3 Early in the course of the disease, tremor and other parkinsonian signs are usually asymmetric but eventually become bilateral. Tremor in PD usually occurs at rest about 4 to 7 Hertz in frequency, and may be most noticeable in the arms or hands (“pill-rolling tremor”). Tremor may also involve the chin, jaw, tongue, and legs. Rigidity, or a passive resistance

to movement, may be seen in the neck, shoulder, elbow, wrist, hip, knee, and ankle. Bradykinesia (slowness of movement) affects activities of daily living, including standing, dressing, feeding, brushing teeth, and bathing. Bradykinesia is assessed in the clinic through finger tapping, hand clasping, wrist pronation-supination, and heel tapping maneuvers. Postural instability or loss of postural reflexes is characterized by propulsion or retropulsion and a tendency to fall. Most motor signs in PD are manifestations of these cardinal characteristics: lack of facial expression (hypomimia), sialorrhea, hypophonia, dysarthria, dysphagia, micrographia, shuffling gait, difficulty standing and turning when walking, difficulty turning in bed, start hesitation, freezing, and festination of gait (Table 1).3 The decline in mobility leads to increasing need for assistance and greater economic impact to care for this population.

Patients with PD also commonly develop autonomic dysfunction (orthostatic hypotension, sphincter disturbances, and/or constipation), cognitive changes, psychiatric effects (depression, psychosis, and/or impulse control disorder), sensory symptoms (pain and/or aching), restlessness, and sleep disturbances (Table 1).4 These non-motor symptoms are increasingly the focus of care in tertiary neurology clinics. While motor symptoms often benefit from dopaminergic therapies, such as levodopa or a dopamine agonist, non-motor symptoms may result from disturbances of other neurotransmitter pathways, such as cholinergic, serotonergic, or GABA-ergic.5 While the combination of motor and nonmotor symptoms in PD increases the options for attaining clinical benefit, these interventions and their potential side effects will also drive up healthcare costs.


The aging of the world’s population remains the most predictable factor in the increasing economic impact of PD. In 2004, a statewide registry in Nebraska estimated a prevalence of 329 persons with PD per 100,000 people within the total population.6 An analysis of prevalence studies estimated the number of people in the United States with PD in 2005 to be 340,000; the authors projected from this that by 2030, with the aging US population, the total number of people with PD would double.7 An epidemiologic study of 10 European countries found crude prevalence rates ranging from 66 to 12,500 per 100,000.8 The World Health Organization in 2004 estimated that there were approximately 4 million persons worldwide with PD. As the overall world population becomes older, PD prevalence will become greater, resulting in a shift

of healthcare expenditures to a significantly larger proportion spent on the wide spectrum of parkinsonian disorders.

Economic Burden of PD

Huse et al9 determined direct costs through medical and pharmacy data from the Medstat MarketScan Research Database from 1999 to 2002 for 20,016 PD patients. They determined indirect costs through estimations based on data reported by Whetten-Goldstein et al.10 The direct an indirect expenditures for patients with PD were compared with expenditures for the same number of matched controls without PD. Total annual direct costs were slightly more than double for PD patients compared with controls ($23,101 vs $11,247; P <.001). While additional costs were seen in outpatient services, hospitalizations, and prescription drugs, nearly half of this excess cost was due to long-term care expenses. These authors conclude the total cost in the United States may be as high as $23 billion annually when combining all indirect and direct costs. Due to the progressive neurodegenerative nature of PD, which leads to prolonged disability, the greatest costs were indirect costs, specifically costs due to productivity loss and uncompensated care (Figure 1).

Comparing populations beyond 65 years of age, Noyes et al2 found the total unadjusted annual health expenditures of PD patients to be more than 2 times higher than annual health expenditures of the population without PD ($21,899 vs $10,732). Primary factors contributing to this differential include greater use of long-term care and home healthcare services. Given the increasing burden of limited mobility in PD patients, services to assist with activities of daily living (ADLs) often become an early indirect expense. With disease progression, other causes of disability, such as cognitive decline, sialorrhea, dysphagia, and incontinence lead to further caregiver and financial burden. In the future, it will be of utmost importance to maintain a balance between quality of care and respect for the costs involved. The currently available treatment

options present challenges for the clinician to achieve this goal.

O’Brien et al have attempted to describe direct costs by evaluating resource use. Using an expenditure model, PD patients were stratified to categories of healthcare utilization: 1) chronic, non-institutionalized management with a nonfatal acute event (which might require hospital admission), 2) chronic, non-institutionalized without an acute event, 3) permanent institutionalized care, and 4) death. Category assignment was based on data derived from the National Health Interview Survey on Disability (NHIS-D) and the National Ambulatory Medical Care Survey (NAMCS). Indirect costs included in the analysis comprised 3 elements: 1) lost wages due to missed work

for people who were employed, 2) lost wages for caregivers who missed work, and 3) out-of-pocket expenses for in-home personal care. This model suggested that in a single year, 23% of PD patients would be chronic, non-institutionalized, and experience an acute event; 54% would be chronic patients managed on an outpatient basis; 11% would spend the year in an institution; and 12% would die. Direct costs per non-institutionalized chronic patient with an acute event were $16,610; for chronic patients without an event, $3573 ($5363 if transportation and medical equipment costs are included); for institutionalized patients, $47,807; and $3769 for patients who died (Table 2). Indirect costs were $9135 per patient: 23% due to lost wages, 51% due to lost caregiver wages, and 24% for death-related costs. US annual direct costs were estimated at $6.2 billion, with a total expenditure estimate of $11 billion when indirect costs are included.11 Although these costs are approximately half of the estimated

total costs reported by others, this study demonstrates that costs increase significantly when PD patients are transferred to institutional care.

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