Objective: To assess whether outpatient palliative care (PC) improves patient or caregiver-centered outcomes in Parkinson’s disease and related disorders (PDRD) compared to current standards of care.

Background: PC is an approach to serious illness that focuses on improving quality of life (QOL) by addressing medical symptoms, psychosocial needs, spiritual wellbeing, and advance care planning. People living with PD and their family caregivers have significant PC needs. While a growing number of centers worldwide now offer PC for PD there have been no comparative effectiveness trials of this approach to date.

Method: We randomized persons living with PDRD with moderate to high PC needs (and caregivers if present) to either continue current standard care or receive standard care augmented by a team-based PC clinic for 12 months. Our PC intervention included care from a neurologist, nurse, chaplain and social worker using structured checklists with guidance from a palliative medicine specialist. We collected patient QOL, symptom burden, grief, mood, spiritual wellbeing and caregiver burden surveys every 3 months. Our primary outcomes were change in patient QOL and caregiver burden at 6 months.

Results: We enrolled 210 patients and 175 caregivers. Compared to standard care at 6 months, persons assigned to PC had better QOL (0.90 improvement vs 0.73 worsening, p = 0.027), symptom burden (7.3 improvement vs. 0.3 worsening, p = 0.0062), grief (2.9 improvement vs. 0.3 improvement, p = 0.01) and caregiver burden (0.75 worsening vs. 2.56 worsening, p = 0.049). There were no significant differences in mood or spiritual wellbeing. Secondary analyses suggested benefits were greatest for those with highest needs.

Conclusion: Outpatient PC improves many patient and care partner-centered outcomes compared to standard care. This study supports efforts to integrate PC into PD care and provides a model utilizing palliative medicine specialists in a mentoring rather than consultative role to maximize limited palliative specialist resources while improving PC integration within movement disorders.

« Back to 2019 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/does-team-based-outpatient-palliative-care-improve-patient-or-care-partner-centered-outcomes-in-parkinsons-disease-and-related-disorders/