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Dissemination and implementation of a virtual care model for Parkinson disease and other chronic conditions
Investigator (PI): Dorsey, E Ray
Performing Organization (PO): (Current): University of Rochester Medical Center, Department of Neurology / (585) 275-2776
Supporting Agency (SA): Patient-Centered Outcomes Research Institute (PCORI)
Initial Year: 2017
Final Year: 2019
Record Source/Award ID: PCORI/DI-1605-35338
Funding: Total Award Amount: $373,468
Award Type: Contract
Award Information: PCORI: More information and project results (when completed)
Abstract: Parkinson disease (PD) is a chronic debilitating condition with significant patient morbidity. Regrettably, over 40% of Medicare beneficiaries with PD do not receive care from a neurologist within four years of diagnosis, resulting in increased risk for morbidity, loss of independence, and premature death compared to those who see a neurologist. Telehealth, the use of telecommunication technologies to provide health care, has the potential to increase access to timely, patient-centered care for individuals with PD. However, evidence of the benefits of telehealth is lacking. With support from PCORI, we recently completed the first national, randomized controlled trial of telehealth for Parkinson disease (Connect.Parkinson). In this 12-month study, approximately 200 individuals were randomized to receive usual care in their community or usual care augmented by four virtual visits by a PD specialist who directly connected to patients in their homes. The study demonstrated that "virtual visits" are (1) in great demand (nearly 1,000 individuals wanted to participate in the study); (2) feasible (91% of 388 virtual visits were completed as scheduled); (3) valuable to patients (per virtual visit, patients saved an average of nearly three hours of time and over 100 miles of travel); (4) satisfactory to patients (97% of participants were satisfied or very satisfied with almost every aspect of the virtual visits); and (5) preferred by patients (patients generally preferred virtual visits with a remote specialist over their usual in-person care with their local PD provider). This proposed research project will transform care for patients with PD through the (i) use of "virtual visits" as explored in our current, PCORI-funded study; (ii) provision of multidisciplinary care; and (iii) access to smartphone applications that provide real-time feedback to individuals. This study is of value to patients, caregivers, clinicians, representatives of advocacy organizations, payers, and policy makers. Thus, we will engage members of these communities to improve design of our care model and ensure that patients and clinicians are able to use these tools. These stakeholders will be engaged regularly and periodically to identify, discuss, and propose solutions to potential barriers to using this model. Current goals include talking with patient organizations to increase awareness of this care model among patients and caregivers, developing virtual visit training programs for clinicians, talking with technology partners to make sure that the technology meets the expressed needs of patients (and their caregivers) and clinicians, and meeting with policy makers and insurance companies to help increase access to telehealth-based care. Together, input from these groups and improvements to our virtual care model can improve care for patients with PD, and ultimately chronic diseases, by using technology to deliver care where it is most needed--in the home.
Abstract Archived: What research finding is this project disseminating? In a PCORI-funded research study, the researchers tested whether virtual care visits for patients with Parkinson's disease were feasible and useful. In the virtual visits--also called telehealth visits--patients could attend an appointment with their doctor using a computer, tablet, or smartphone from home, rather than traveling to the doctor's office. One group of patients in the study received their usual care from a local neurologist. A second group received their usual care plus up to four virtual visits from a Parkinson's disease specialist licensed in their state. The team compared the two groups' quality of life, quality of care, and time and distance traveled per visit. The research team found that virtual visits were a feasible way for Parkinson's disease patients to receive care: 98% of individuals in the virtual-visit group completed at least one telemedicine visit. Both patients and clinicians rated the visits highly, and patients preferred virtual visits to in-person visits. The virtual visits saved time for patients and their caregivers. The research team didn't find a difference in health outcomes between the two groups. Why is this research finding important? Patients with Parkinson's disease who don't receive care from a neurologist within four years of diagnosis have an increased risk for declining health, loss of independence, and premature death. Over 40 percent of Medicare beneficiaries with Parkinson's disease fall into this category. Virtual visits could improve access to specialty care for people who live too far away from a Parkinson's disease specialist, have trouble leaving their homes, or cannot get to the doctor's office for other reasons. However, few studies have looked at whether telehealth can work for these patients. This study showed that virtual care could work and that patients and physicians liked it. What is the goal of the dissemination and implementation project? In this dissemination project, the researchers are building on the telehealth services they tested in their original research study. The team has developed a care program, Parkinson's Disease Care New York (PDCNY), to provide virtual care free of charge to a diverse group of 400-500 patients with Parkinson's disease across New York State. What is the project team doing? The research team is expanding its telehealth services to include visits with doctors and nurses who specialize in conditions that often accompany Parkinson's disease, such as dementia and depression. The team is also offering educational sessions for patients and their families on topics such as exercise and nutrition. The team will continue to identify ways to improve services based on feedback from patients, clinicians, and others involved in PCDNY. PDCNY will deliver telehealth services to a more varied group of patients than those who participated in the original research study. The program will reach more people who lack access to nearby specialty care, ethnic and racial minorities, patients over 80 years old, and patients in nursing homes or who are homebound. The project team will also work to build capacity on a national scale by training neurologists in providing telehealth care for Parkinson's disease patients and by training professionals in physical therapy, speech therapy, and occupational therapy to provide better care for patients with Parkinson's disease. How is the project team evaluating its dissemination activities? The project team is using data that PDCNY is regularly collecting to evaluate both the implementation approach and the effectiveness of the virtual visits provided in the PDCNY program. The team is tabulating the number of patients and caregivers served, demographic information, neurologist care within the past year, and nursing home or homebound status. The team is also tracking the number of remote sites (satellite clinics with technology to conduct virtual visits) implementing PDCNY, problems participants report in accessing the virtual care visits, and number of virtual care visits by patients. The project team is collecting patient outcomes including quality of life, quality of care, caregiver burden, cognition (measured using the Montreal Cognitive Assessment), and depression (measured using the Geriatric Depression Scale). How is the project team involving patients and others in this dissemination project? The project team is working closely with Parkinson's disease patients and organizations. In addition, the team has formed partnerships with technology companies and medical, telemedicine, insurer, and policy organizations. These stakeholders serve on the project's advisory board, help to develop and provide training to clinicians, assist with solving problems that arise in implementing the program, and promote awareness of the virtual care approach and the project's findings.

MeSH Terms:
  • Aged
  • Aged, 80 and over
  • Caregivers
  • Chronic Disease /therapy
  • Cognition Disorders /diagnosis
  • Computers
  • Computers, Handheld
  • Dementia /complications
  • Depression /complications
  • Health Care Costs
  • Health Services Accessibility
  • Humans
  • Medicare
  • Neurology /*organization & administration
  • New York
  • Occupational Therapy
  • Outcome Assessment (Health Care)
  • Parkinson Disease /*therapy
  • Patient-Centered Care /organization & administration
  • Physical Therapy Specialty
  • Program Development
  • Quality of Health Care
  • Quality of Life
  • Smartphone
  • Speech Therapy
  • Telemedicine /*methods
  • Time Factors
Country: United States
State: New York
Zip Code: 14642
UI: 20181540
Project Status: Completed
Record History: ('2019: Archived abstract to Abstract Archived 1 field and added new abstract. ',)