The Parkinson’s Foundation is collaborating with the University of Rochester Medicare Center to make palliative care a standard practice across all Parkinson’s Foundation Centers of Excellence.
The foundation has designated 47 medical centers worldwide as Centers of Excellence, including 33 in the United States. These centers include a specialized team of neurologists, movement disorder specialists, physical and occupational therapists, mental health professionals who are trained to address the needs of Parkinson’s patients. The foundation received a Patient-Centered Outcomes Research Institute (PCORI) grant to develop its palliative care expansion.
“The Parkinson’s Foundation is creating a cutting-edge program that will add a new level of support to help people with Parkinson’s disease and their care partners, providing them with the additional care they need throughout their entire Parkinson’s journey,” said John L. Lehr, president and CEO of the Parkinson’s Foundation. “The added training for Center of Excellence health care professionals and the telemedicine focus for this program will be essential to providing better care for the Parkinson’s community during this pandemic and beyond.”
The program will support a new education initiative to train specialized care interdisciplinary care teams regarding practices to support Parkinson’s patients, supported by recently developed treatments and research.
The goal is to improve the quality of life for people suffering from Parkinson’s, including detection and management of non-motor symptoms; addresses known gaps in care, such as caregiver support and advance care planning.
“Palliative care is of particular importance for people living with Parkinson’s disease, as it is a complex, progressive, neurological disease. People living with [Parkinson’s] face a variety of challenges along the journey, which may include motor (e.g. tremors, dyskinesias) and non-motor (e.g. anxiety, depression) symptoms that can have a significant impact on quality of life and activities of daily living,” Nicole Yarab, vice president of clinical affairs at the Parkinson’s Foundation told Hospice News.
Though the education was initially designed to be implemented in-person, the foundation is adapting it for virtual delivery due to the ongoing COVID-19 pandemic. Some aspects of COVID-19 preparedness will be incorporated into the training, which will focus on palliative care principles.
The teams that receive the training will be focused on outpatient delivery of palliative care through Parkinson’s Foundation Centers of Excellence.
“The goal is to make palliative care a core value of the Parkinson Foundation Center of Excellence network. Palliative care provides an additional level of support to people living with Parkinson’s Disease, and their care partners and supports improved quality of life,” Yarab said. “The network is comprised of 47 centers (33 in the United States and 14 internationally) with experts provide who direct care to over 193,000 persons living with Parkinson’s annually. These are global experts in Parkinson’s Disease care and research who take a multidisciplinary approach to care delivery.”
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