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Parkinson's Care in the U.S.
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Status of Patient Care and Information on Services
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December 1999
The key issues and problems for delivery
of services to Parkinson’s patients have been examined through a review
of literature1 and consultations with professionals in the field.
This investigation has classified the range of helpful and necessary services
for PD at different stages of disease and specified a number of the barriers
to optimal delivery of those services to the general population.
Wide gaps were found in the empirical data available to describe Parkinson’s
patients and patient access to care. The limited available evidence
suggests that large numbers of patients may receive inadequate care.
Principal conclusions of this review follow:
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Population Data on Service Delivery
-- Very little data are available to gauge fundamental questions about
the extent of PD and the availability of optimal treatment. For example
estimates of prevalence of PD vary widely from about a half million
to well over a million. Only a few population based studies have
been conducted on very limited geographic areas.2
Surveillance data are needed to measure the incidence and progression of
the disease and to identify health problems and barriers to making research
advances available to the population.
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Patterns of Diagnosis and Early Treatment
Practices -- Early treatment has been shown to reduce disability and
delay mortality, but the few available community studies of PD find as
many as 1/3 or more of the population misdiagnosed or undiagnosed.
Better surveillance data are needed to delineate and address the apparently
large problem of undiagnosed and under-served patients. Greater efforts
are needed on research to define more precise biomarkers for PD, on education
of primary physicians to recognize signs of PD and treatment options, and
on the development and promotion of criteria for referrals to specialists
for diagnosis and/or treatment.
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Specialties of providers and treatment practices
for complex late stages of PD -- Physicians have a variety treatment
options for PD including a number of medications and rehabilitation strategies,
but individual patients respond differently to treatments and over the
often long course of the disease complications and fluctuations increase
making maintenance of optimal functioning a complex and uncertain task.
Careful monitoring and adjustment of treatments is important to avoid complications
at later stages of PD. Yet little is known about the type and quality
of medical care received by the population of PWP’s. For example,
no data are available on what proportion of patients see a movement disorder
specialist and the difference for outcomes and costs for specialist care.
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Cost and Burden of Illness -- As
a progressive degenerative condition often leading to disability, Parkinson’s
Disease places a large financial burden on patients, families and
the economy. In addition to medical costs for physician visits and prescription
drugs, there are major costs for long term care (at home as well as in
nursing homes and intermediate care facilities) and loss of work among
the large number PWP’s with the disease in their peak earning years.
The government and private insurers partly cover health care and disability
for PD, but key costs, such as long term care, rehabilitation services
and prescription drugs are often not covered. The cost burden on families
versus insurance and the impact of those costs on treatment outcomes and
families is not known.
The estimate of $25B total cost to
the economy of PD is most often quoted by advocates for PD research, but
comprehensive studies based on actual experience from claims have not been
attempted to verify this.
Experience from chronic diseases, such as cancer,
arthritis or diabetes, indicates that advancements in public health requires
a full range clinical research to move science into health care for the
population.3 Such research considers patient problems
as well as the technical aspects of translating scientific knowledge into
helpful therapies. Parkinson’s care will benefit from a clinical
research agenda.
Notes:
1. Sekonde,
E. & P. Cohen. "Access to Care for Parkinson's Disease: Literature
Review" QADPC working paper, 8/99.
2. See:
Mayeux, R. et.al. A Population-Based Investigation of Parkinson’s Disease
with and without Dementia. Arch Neurol 1992; 49: 492-496. Schoenberg
Bruce , Anderson Dalls, and Haerer Armin; Prevalence of Parkinson’s Disease
in the Biracial Population of Copiah County, Mississippi, 1985 Neurology
(35) 541-854.Rajput, Offord Kenneth, Beard Mary , Kurlnad Leonard,
Epidemiology of Parkinsonism: Incidence, Classification, and Mortality;
Epidemiology of Parkinsonism; 1983:278-282.
3. Clinical
Research Defined. In 1995 the Director of the National Institutes
of Health (NIH), convened the NIH Director's Panel on Clinical Research
(CRP). The Panel’s working definition of clinical research included
3 components:
(a)
Patient-oriented research. Research conducted with human subjects (or on
material of human origin such as tissues, specimens and cognitive phenomena)
for which an investigator (or colleague) directly interacts with human
subjects. This area of research includes:
Mechanisms of human disease
Therapeutic interventions
Clinical trials.
Development of new technologies
(b)
Epidemiologic and behavioral studies
(c)
Outcomes research and health services research.
Excluded from this definition
are in vitro studies that utilize human tissues but do not deal directly
with patients. In other words, clinical or patient-oriented research is
research in which it is necessary to know the identity of the patients
from whom the cells or tissues under study are derived. Therefore funding
for research that is concerned with examining patients has been the area
of concern for the Panel and its subcommittees, not funding for basic studies.
However, mixed grant applications, as in program projects in which one
element of the proposal is an animal model and one is a human model, were
classified as clinical research for the purposes of the Panel's activities.
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