Parkinson’s disease (PD) affects 1 to 2 percent of adults over age 65, or approximately 1.5 million Americans. Although PD is traditionally characterized by such motor symptoms as tremor and slowed movement, more recent research shows that PD patients also commonly experience non-motor symptoms, such as pain, fatigue, depression, and dementia. PD interferes with patients’ quality of life, leads to disability, decreases life span, and causes significant distress for caregivers. Unfortunately, many of the needs most important to patients and their caregivers (e.g., depression, planning for the future) are poorly addressed under current care models.
Palliative care is an approach to patient care that focuses on reducing suffering by addressing physical pain, psychological issues, social factors, and spiritual well-being. Although palliative care was developed for patients with cancer, recent studies support its use for other illnesses, including heart failure and lung disease. There is increasing evidence that PD patients could also benefit from palliative care, and a small but growing group of centers now offers these services for PD patients. However, there is no evidence that this approach improves outcomes compared with standard care. There is also no agreement on which patients should be referred for these additional services and significant variability in exactly what services are provided.
The goal of this proposal is to take a patient-centered approach to answering these questions. Our specific objectives are to: (1) determine whether an outpatient palliative care team improves patient quality of life and caregiver distress compared with usual care with a neurologist, (2) determine which patient and caregiver characteristics best predict benefit from palliative care services, and (3) interview patients and caregivers to optimize service delivery and selection.
This project is important to patients and their family caregivers because it assesses a new approach to PD care that has the potential to improve quality of life, caregiver burden, and other important outcomes (e.g., nursing home placement). By testing the effectiveness of this approach and determining who benefits most from it, we hope to provide a new option to assist those PD patients at highest risk for poor outcomes. It is important to formally test these assumptions because it is possible that changes could be made to this approach to better fit the needs of PD patients and their caregivers.
Our team includes an advisory panel of patients, caregivers, and members of healthcare organizations. This panel serves many roles, including: (1) assisting with study design, particularly with ensuring that we choose outcomes relevant to patients and caregivers; (2) assisting with study conduct, including strategies to recruit and retain patients; and (3) analyzing and disseminating study results, including reviewing participant interviews and suggesting future directions to implement and disseminate results.