Investigators/Authors: Mark Guttman, MD, Centre for Movement Disorders; Markham, Canada; Tanya Simuni, MD, Northwestern University, Chicago, IL; Peter Schmidt, Ph.D., Miami, FL.
Objectives:The over-arching objective of the Parkinson’s Outcomes Project is to develop the infrastructure, resources, and evidence necessary to deploy a scalable system to support the provision of efficacious care to everyone with Parkinson’s disease. Over the next year, we intend to advance against two objectives: (1) develop, validate, and test a Parkinson’s severity scale, addressing clinically-measured and patient reported motor and non-motor symptoms of Parkinson’s disease that can be used to associate actual versus expected outcomes; and (2) develop an electronic data capture system to allow clinicians to collect the information necessary to track this severity scale in a patient while providing in real-time a display of any historical data and a comparison with the results in other, similar patients.
Background: The Parkinson’s Outcomes Project is a comparative effectiveness study of Parkinson’s disease designed to compare the care delivered across centers and neurologists who provide care at NPF’s Centers of Excellence. The study, which currently includes almost 7,000 patients followed longitudinally by over 150 neurologists for four years and counting (the average subject has at least one year of follow-up, with 23% followed for over two years), evaluates subject demographics, care, and both patient-reported and clinically measured outcomes with the goal of identifying the care practices that result in better outcomes.
Piloted using a paper form, data collected to-date have shown that the broad vision of the Parkinson’s Outcomes Project requires electronic data collection to provide feed-forward data (i.e., consistent and systematically collected data from past visits presented for review at the current visit) and feedback on how the current subject’s status compares to other similar subjects seen previously.
Methods/Design: The project will start with a modified Delphi process to define the feed-forward, feedback display definition, including the design of the key metrics. Key metrics will be selected with attention to the risk of information overload in a clinical setting that has hampered previous attempts to quantify Parkinson’s. After definition, the investigators will oversee the implementation of this system in a web-based system with a mobile interface. This system will be deployed in clinics as part of a validation study designed to evaluate the feasibility of including such a system in routine care, the usefulness of the metrics selected to clinical decision making, and the correlation between the metrics selected and other commonly-used metrics for the health and clinical status of people with Parkinson’s.
Relevance to Diagnosis/Treatment of Parkinson’s disease: Based on data published in the literature, over 6,000 people die annually from poor Parkinson’s care, due to the fact that the risk-adjusted mortality rate for people with Parkinson’s managed in primary care is 28% higher than that of those managed by a neurologist. These patients are also approximately 25% more likely to break their hip or be placed in a nursing home. Our goal is to help save those lives and prevent these complications and to provide people with Parkinson’s the longest, best life possible.
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Investigators/Authors: Janis Miyasaki, MD, Toronto Western Hospital, Toronto, Ontario, Canada
Objectives: (1) To determine which quality of life interventions can provide an improvement in patients’ end-of-life care; (2) To determine whether home palliative care can relieve caregiver burden compared to hospitalization; (3) To determine the best method of pain/discomfort assessments and management for advanced-stage Parkinson’s disease; (4) To identify patient care goals, determine priorities of care, and to design strategies to achieve expected outcomes of care.
Background: For over three years, Dr. Miyasaki has been developing a palliative care program at Toronto Western. In Parkinson’s, the palliative phase of the disease lasts, on average, 2.2 years and is defined by decreased response to dopamine replacement therapy and cognitive decline. As symptomatic therapies fail, palliative care provides comfort in spite of symptom expression. One study found that 42% of patients with advanced disease had difficulties in their daily life that were not being addressed by their healthcare team. Palliative care is intended to address this. Taking a holistic approach to providing comfort to the patient, palliative care focuses on reducing the impact of disease and has been found in study after study to deliver better quality of life to patients in whom symptomatic therapy has decreased efficacy.
Methods/Design: Dr. Miyasaki will expand the existing Toronto Western palliative care program that over the past year delivered 507 visits seen by the multidisciplinary palliative care team. For each patient seen in the palliative care program, the team will evaluate clinical status, patient-reported outcomes, and caregiver strain. These results will be joined with encounter data, patient demographics, and interventions and evaluated on a pre- and post-intervention basis and versus patients who do not participate in the palliative care program.
Relevance to Diagnosis/Treatment of Parkinson’s disease: The suffering associated with advanced Parkinson’s disease as treatments fail and dystonia and other symptoms increasingly result in discomfort and distress is frequently not addressed in clinics. Until we can eliminate Parkinson’s, the impact of advanced disease is an unavoidable consequence of its progression and we need to take steps to improve the lives of patients at every stage of the disease.
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