Advancing Research

Launching A Modern Supportive Care Program Across U.S. Centers of Excellence

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The Parkinson’s Foundation and the University of Rochester, a Parkinson’s Foundation Center of Excellence, are working together to launch a ground-breaking initiative to make palliative care a standard part of care across all U.S. Centers of Excellence. Centers of Excellence are designated medical centers with a specialized team that practices the latest Parkinson’s disease (PD) treatments, research and the best care.

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

The project titled Implementing Team-based Outpatient Palliative Care in Parkinson Foundation Centers of Excellence received a Patient-Centered Outcomes Research Institute (PCORI) award in March 2020. The award will fund the creation of a new program that will launch customized palliative care training across 33 Centers of Excellence.

“The Parkinson’s Foundation is excited to create an innovative care program across our U.S. centers that can not only modify how we treat Parkinson’s through providing an extra level of support to patients and care partners, but how we utilize a front-line telemedicine approach to train PD professionals,” said Nicole Yarab, RN, Parkinson’s Foundation Vice President of Clinical Affairs and secondary lead on the PCORI project.

Redefining Palliative Care

For many, the term palliative care can bring fear and entangled thoughts of hospice care. Dr. Kluger, a neuropalliative care (the combination of neurology and palliative care) expert, prefers the term supportive care.

Supportive care: helping people with Parkinson’s and care partners plan for the future, address non-motor symptoms and provide an extra level of support.

“Supportive care helps people plan for the future,” Dr. Kluger said. “We provide support through a proactive model of care. We’re not waiting for caregivers to burn out or crises to happen. We bring together a team to provide an extra layer of support for the many medical, emotional and social challenges of this serious illness. When we describe it this way, people say ‘sign me up.’”

close up resting hands on another

Palliative or supportive care is not the same as hospice care. Palliative care includes hospice, which is end-of-life palliative care, but also provides support for patients and families from the time of diagnosis. Some centers, like University of Colorado Movement Disorders Center, a Center of Excellence, offers palliative care for those undergoing a major procedure, like deep brain stimulation.

“Having that extra layer of support allows you to focus on being active and comfortable. You can and should do both palliative and disease-focused care, which is why we need to integrate palliative care into how we treat Parkinson’s.”

- Dr. Kluger

Why A Palliative Care Program?

Palliative care helps people live as well as possible for as long as possible, while also providing support to care partners. “We need to make sure care partners are being assessed and offered resources. We need to meet the psychological and spiritual needs of people with PD as well as help manage pain,” Dr. Kluger said.

In a previous study Dr. Kluger and his team showed that palliative care for people with Parkinson’s:

  • Improves quality of life for the person with PD and caregiver.
  • Improves detection and management of non-motor symptoms.
  • Addresses known gaps in PD care including caregiver support and advance care planning.
  • Can be delivered by teams without specialized palliative care training if they receive appropriate guidance.

“We know that palliative care works for people with Parkinson’s. The question now is how do we get it to as many people as possible?” Dr. Kluger said. “This award will take this model of care and make it the new standard across all Centers of Excellence.”

Personalizing Palliative Care Training

The key to making the new palliative care program successful is creating individualized training and implementation plans to meet the needs and resources of each center.

Every U.S. center will receive a combined 10 hours of individualized training sessions led by the Parkinson’s Foundation and Dr. Kluger, designed to create and launch a palliative care program that utilizes each team’s strengths, staff and PD care model. “This is one of the largest implementation models of palliative care ever conducted,” Dr. Kluger said.

Evolving Due To COVID-19

The rise of COVID-19 prompted the Parkinson’s Foundation and Dr. Kluger to evolve the program’s original in-person design to a virtual platform. Thanks to PCORI’s “COVID-19-Related Project Enhancement” award, the Parkinson’s Foundation is developing the online training for each center and will address COVID-19 topics and how to meet palliative care needs via telemedicine.

“Moving the training online is going to be logistically better and higher-quality,” Dr. Kluger said. Where as in-person training would have been difficult for an entire team at the same time, virtual training allows team members to do some learning on their own and to maximize our use of live sessions with the entire team. After the training session, there will be built-in ongoing coaching to adjust and optimize each palliative care program once in practice.  

The Parkinson’s Foundation and Dr. Kluger is scheduled to launch the new virtual training palliative care program this fall and will reach approximately 650 healthcare professionals across U.S. centers ― including physicians and clinicians. Soon, every person with Parkinson’s who receives treatment at a U.S. Center of Excellence and their care partners will have a new level of supportive care designed to make life better.

Learn more about the Parkinson’s Foundation Centers of Excellence network and find your nearest center.

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