Quality Care Initiatives

The vision of the Parkinson’s Foundation is for all people to have access to equitable and quality Parkinson’s disease (PD) care. When people with Parkinson’s receive quality Parkinson’s care, they can better manage their PD symptoms —and maximize quality of life. We provide best-practice care training, the latest information and access to educational tools for doctors, nurses and every member of the health care team.

Access to Parkinson’s Care is Limited

One million Americans live with PD. This number is expected to increase to 1.2 million by 2030. The reality is that not every American with Parkinson’s has access to a PD specialist.

Less than 17,000 neurologists practice in the in the U.S. (only 5,000 general neurologists). The number is projected to increase to 18,000 by 2025.
660 movement disorders specialists practice in the U.S. and fewer than 10 practice in rural counties.

Increasing Access to Quality Care

We believe in making quality care accessible for all people with Parkinson’s. We do this through our care strategy:

1. Easier Parkinson’s Diagnosis

Increase awareness of the early signs of Parkinson's and the challenges of getting an accurate diagnosis. We do this through funding fellowships for neurologists and nurse practitioners.

2. Utilization of Care

We help healthcare professionals apply patient-centered PD quality care through our Global Care Network, which designates centers that offer specialized PD care. We also continually develop new resources designed to help healthcare professionals deliver evidence-based PD care — such as our robust online Learning Lab with courses tailored for all disciplines.

3. Access to Care

We reduce barriers to care for populations of focus. We do this through training the PD healthcare professionals who have the greatest reach and impact, and work with community partners to understand the needs and help reach these populations.

4. Access to Support

We fund essential local programs and events through our community grants. We aim to reach all 50 states and host more Foundation-led education programs. Call our Helpline at 1-800-4PD-INFO (1-800-473-4636) to help your patients find their nearest wellness and education program.

5. Access to Information

We connect people with PD and care partners to helpful educational materials based on their needs. We do this through ensuring PD information is available, useful and accessible to people with PD and their care community.

Quality Care Initiatives

We believe in patient-centered quality care. Healthcare professionals are key to providing better care for people with Parkinson’s. Personalized treatment plans, complementary therapies, increased focus on mental health and understanding care partner strain to improve daily care should all be integral when it comes to Parkinson’s care.

Explore our quality care initiatives that put the person with Parkinson’s first:

Hospital Care Initiative

The Problem

Each year more than 300,000 people with Parkinson’s disease receive hospital care in the U.S. Whether unexpected or planned, a hospital visit puts a person with PD at significant risk of avoidable complications that can lead to longer hospital stays, more severe PD symptoms, and increased costs. We estimate that every year, 1 in 6 people with Parkinson’s will experience avoidable complications in the hospital, often related to issues with medication management, mobility and dysphagia.

How We Are Addressing It

The Parkinson’s Foundation is committed to leading the national effort to improve hospital care through systemic changes in areas of policy, technology, culture and education. Our Hospital Care Initiative aims to eliminate preventable harm and promote higher reliability in care for people with Parkinson’s in the hospital. Through this initiative, we have developed key tools and resources for patients and providers.

Parkinson’s Foundation Hospital Care Recommendations

Building on our Making Hospitals Safer for People with Parkinson’s report, Parkinson’s Foundation Hospital Care Recommendations outline five standards of care to improve hospital safety and provide tools to facilitate their implementation. The Recommendations were created in partnership with Hackensack Meridian Health, Henry Ford Health, and the University of Florida Health Norman Fixel Institute for Neurological Diseases, with support from Dr. Peter Pronovost and Manatt Health.

DOWNLOAD HOSPITAL CARE RECOMMENDATIONS

Care Standards

All Parkinson’s medications are ordered in a custom fashion, according to patients’ at-home regimen.

Why it matters: Ordering medications in a custom fashion allows clinicians to provide exact timing on the order that reflects the at-home schedule of people with Parkinson’s. This is essential given the short half-lives of many dopaminergic medications and potentially severe complications caused by deviations in schedules and doses
All Parkinson’s medications are administered within 15 minutes of patients’ at‑home regimen, 100% of the time.

Why it matters: Delivering medication on time every time is essential to preventing harm to people with Parkinson’s, whose symptoms are tightly managed via prescribed patient schedules. There is no defined medication administration window to prevent worse outcomes, but they can appear when medications are delivered early or late by 30–60 minutes, so a more rigorous 15-minute standard for medication administration timeliness must be established to prevent clinical harm.
Potentially harmful medication events are eliminated, particularly in dopamine-blocking medications, agents for pain, and sedatives.

Why it matters: Certain routine and normally benign medications can worsen Parkinson’s symptoms due to their interaction with Parkinson’s medications and the Parkinson’s disease process. Haloperidol, metoclopramide, and prochlorperazine are among the most important contraindicated medications to avoid in the care of people with Parkinson’s to prevent harm. View our list of contraindicated medications.
All people with Parkinson’s should mobilize three times a day if clinically appropriate and under professional supervision if necessary.

Why it matters: Limited movement in people with Parkinson’s can make motor symptoms like festination, freezing, and rigidity more pronounced, which increases fall risk. Early mobilization and effective rehabilitation strategies can reduce movement limitations, decrease fall risk, and prevent secondary complications associated with hospitalization.
All people with Parkinson’s should undergo screening for dysphagia within 24 hours of admittance, with measures taken to minimize the risk of aspiration pneumonia, as needed.

Why it matters: Oropharyngeal dysphagia is common among people with Parkinson’s (80%), yet many people with Parkinson’s are not aware they have it (33%). Screening can ensure providers and people with Parkinson’s are aware of any risks related to swallowing. It is equally imperative that providers recognize the role that medication management plays in aspiration prevention, even when dysphagia is identified. Careful consideration of alternative medication delivery must be part of standard Parkinson’s hospital care.

Palliative Care Initiative

The Problem

Treatments and medications prescribed for people with Parkinson’s primarily address movement symptoms. In Parkinson’s, non-movement symptoms — such as depression, anxiety and fatigue — go underreported and undertreated. People with Parkinson’s often find these symptoms to be more debilitating than movement symptoms, according to our clinical study, the Parkinson’s Outcomes Project.

“Palliative care is about professionals of all disciplines really being active listeners and listening to the agenda of a patient and family who's sitting in front of you, not the agenda of what you think that they should need. Listen to where they are in their Parkinson's journey.”

- Joan Gardner, BSN Nurse

How We Are Addressing It

Palliative care, also known as supportive care, is an approach to care that focuses on treating the whole person instead of the disease. When healthcare professionals provide PD-tailored palliative care, the focus is on quality of life. Studies have shown that people who receive palliative care experience:

Less pain and other symptoms like constipation.
Improved quality of communication with doctors and family members
More emotional support.
Care that is more aligned with their wishes and meets their emotional and spiritual needs.

Our goal is to make the palliative care approach widely available and accessible from the time of diagnosis, providing support for people with Parkinson’s and their family members, throughout every stage of the disease.

Our initiative, Implementing Team-based Outpatient Palliative Care in Parkinson’s Foundation Centers of Excellence, provides personalized training to PD specialists and teams in the art of palliative care. Parkinson’s Foundation designated centers receive individualized training and implementation plans that best meet the needs and resources of their center. Working in collaboration with the University of Rochester Medical Center, the program was launched based on a Patient-Centered Outcomes Research Institute (PCORI) funded study. Through this initiative, the Foundation has trained more than 800 health care professional team members across Centers of Excellence, which provide care for more than 70,000 people with PD.

A Parkinson’s Palliative Care Model

The 5 Pillars of Palliative Care & Parkinson's

- Systematically assess non-movement symptoms, at least annually.
- Use a scale, template, or checklist.
- Comprehensive screening for non-movement symptoms should specifically include pain, constipation, appetite and weight loss, in addition to other commonly assessed symptoms.
Clinicians are encouraged to use a standardized scale or brief screening questions for systematic screening that goes beyond the psychiatric disorders of anxiety and depression to address normal but difficult emotions and spiritual challenges (such as feeling hopeless, grief, anger, frustration).

For identified emotional and spiritual needs, chaplains can help address issues that are screened, but they are not the only way. Psychologists, counselors and social workers can also address emotional and spiritual needs.
The goal is for healthcare teams to be systematic in screening for advance care planning and having these conversations in order to complete advance care planning documents.

Advance care planning documents should include healthcare proxy and state-specific forms. They should be visible and in the correct location in the Electronic Medical Record. If completed outside the medical setting, these documents should be reviewed by medical professionals to ensure they make medical sense and align with patient/family values.

Practitioners — a neurologist, dedicated Advanced Practice Providers and/or social worker — should discuss advanced care planning with patients and families in office. Alternatively, they can refer the patient and family to a group clinic, other hospital settings (such as a geriatric clinic) or another resource that can help them complete these documents.
- For specialist palliative care, be systematic in screening and have a process to address positive screens. Screening can include the use of a tool such as the Brief Needs Assessment Tool.
- Addressing needs could include having integrated neuropalliative care within the center or department, or referring to a palliative clinic in the institution or community.
- Hospice should be considered for patients who are in an advanced state. Teams should be comfortable discussing hospice and have a process for referring to hospice that includes staying involved in the care of patient, at least as a consultant.

VIEW PALLIATIVE AND SUPPORTIVE CARE RESOURCES

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Rehabilitation Medicine Initiative

The Problem

Rehabilitative care is under-utilized in Parkinson’s care. It is often used only in later disease stages, despite research demonstrating its positive effects. Rehabilitation can play a crucial role in managing and improving PD symptoms, quality of life and reducing disability from day one.

How We Are Addressing It

Our Rehabilitation Medicine initiative aims to raise awareness of the importance of rehabilitation care in PD. That means helping people with Parkinson’s advocate for starting rehabilitative services at any point in their disease and motivating healthcare professionals to include evidence-based rehabilitation interventions to every patient with Parkinson’s.

The Parkinson’s Foundation Global Rehabilitation Medicine Task Force published a consensus statement regarding the incorporation of rehabilitation in PD care. This expert-based consensus statement outlines key tenets of rehabilitative care including its multidisciplinary approach and discipline-specific guidance for occupational therapy, physical therapy, speech language pathology, and psychology/neuropsychology across all PD stages. Key takeaways include:

Rehabilitation for PD should involve the person with PD and care partner and should incorporate shared decision-making to promote symptom management and independence.
Care coordination and communication among the rehabilitation team, the entire PD care team, the person with PD, and care partner are critical for best results.
Rehabilitation professionals should have knowledge and expertise in treating people with Parkinson’s disease.
Since Parkinson’s is a progressive disease, rehabilitative care should be offered at diagnosis and regularly throughout the disease course with repeated assessments and interventions adapted to changes in a person’s condition or needs.

Learn More Read our Article

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Professional Education Opportunities

The Parkinson’s Foundation focuses on best-practice care training, providing the latest information and increasing access to educational tools for doctors, nurses and every member of the health care team.

ONLINE COURSES

RESOURCES BY DISCIPLINE

Access to Parkinson’s Care is Limited

Increasing Access to Quality Care

1. Easier Parkinson’s Diagnosis

2. Utilization of Care

3. Access to Care

4. Access to Support

5. Access to Information

Quality Care Initiatives

Hospital Care Initiative

The Problem

How We Are Addressing It

Parkinson’s Foundation Hospital Care Recommendations

Care Standards

1. Custom medication orders

2. Timely medication administration

3. Harmful medications eliminated

4. Routine mobilization

5. Screenings for dysphagia

Palliative Care Initiative

The Problem

How We Are Addressing It

A Parkinson’s Palliative Care Model

1. Assess and manage non-movement symptoms

2. Support emotional and spiritual needs

3. Support care partners

4. Advance care planning

5. Refer to palliative care specialist and hospice, when ready

Rehabilitation Medicine Initiative

The Problem

How We Are Addressing It

Professional Education Opportunities