PCORI Award to Bring Palliative Care to Parkinson’s Foundation Specialty Centers in US

The Patient-Centered Outcomes Research Institute (PCORI) has awarded the Parkinson’s Foundation and the University of Rochester Medical Center $1.4 million to establish palliative care as a standard across the foundation’s Center of Excellence Network in the U.S.

This initiative,  “Implementing Team-based Outpatient Palliative Care in Parkinson Foundation Centers of Excellence,” will provide tailored training in palliative care to the 33 centers in the U.S. There are 47 in the global network, each with a specialized team of neurologists and other movement disorder specialists, tasked with keeping up to date on Parkinson’s treatments and research.

“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,” John L. Lehr, foundation president and CEO, said in a press release.

The project will be led by Benzi M. Kluger, MD, founding director of the Palliative Care Research Center at the university’s medical center, one of the Centers of Excellence. Kluger has conducted multiple studies on palliative care, which is aimed at improving the quality of life of patients — and their families — by providing relief from pain and helping with the many issues associated with serious illness.

Nicole Yarab, the foundation’s vice president of clinical affairs, will serve as the project’s co-principal investigator.

Due to the COVID-19 outbreak, personalized training will be done virtually and address the needs of palliative care patients, as well as topics related to COVID-19.

“The added training for Center of Excellence healthcare 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,” Lehr said.

In a previous PCORI-funded study, Kluger and his team demonstrated that palliative care for Parkinson’s patients improves quality of life, aids in detecting and managing non-motor symptoms, and addresses Parkinson’s care gaps including caregiver support and advance care planning.

They also showed that palliative care can be effectively delivered by teams that aren’t specifically trained, provided appropriate guidance is given.

“It’s exciting because Centers of Excellence are international leaders in Parkinson’s care,” Kluger said.  “If successful, in the next three years team-based palliative care will be a new standard at Centers of Excellence, a new option for everyone who seeks treatment in these centers, and a new skillset for the healthcare professionals who train at these Centers of Excellence.”

PCORI awards are based on a review process in which proposals are evaluated by patients, clinicians, clinical scientists, and other stakeholders. Applications are assessed for scientific value, methodological rigor, and how well they will engage patients and others.

“This project was selected for PCORI funding not only for its scientific merit and commitment to engaging patients and other stakeholders, but also for its potential to fill an important gap in our health knowledge and [to] give people information to help them weigh the effectiveness of their care options,” said Nakela L. Cook, MD, PCORI’s executive director.

“We look forward to following the study’s progress and working with the Parkinson’s Foundation to share the results,” Cook added.

A nonprofit, PCORI supports research that give patients and their caregivers and clinicians evidence-based information needs to make better-informed healthcare decisions.