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    Original Investigation
    February 10, 2020

    Comparison of Integrated Outpatient Palliative Care With Standard Care in Patients With Parkinson Disease and Related Disorders: A Randomized Clinical Trial

    Author Affiliations
    • 1Department of Neurology, Anschutz Medical Campus, University of Colorado, Denver, Aurora
    • 2Now with Department of Neurology, University of Rochester Medical Center, Rochester, New York
    • 3Department of Neurology, University of Alberta, Edmonton, Alberta, Canada
    • 4Department of Neurology, University of California, San Francisco, San Francisco
    • 5Division of Palliative Medicine, Department of Medicine, University of California, San Francisco, San Francisco
    • 6Department of Biostatistics and Informatics, School of Public Health, University of Colorado, Aurora
    • 7Division of General Internal Medicine, Department of Medicine, School of Medicine, University of Colorado, Aurora
    JAMA Neurol. 2020;77(5):551-560. doi:10.1001/jamaneurol.2019.4992
    Key Points

    Question  Is outpatient palliative care associated with improvements in patient or caregiver outcomes compared with current standards of care among persons with Parkinson disease and related disorders?

    Findings  In this randomized clinical trial of 210 patients with Parkinson disease and related disorders and 175 caregivers, patients receiving palliative care had better quality of life at 6 months (primary outcome) as well as better symptom burden and rates of advance directive completion. No significant difference was found in caregiver burden at 6 months (coprimary outcome).

    Meaning  Outpatient palliative care may improve certain patient and caregiver outcomes associated with Parkinson disease and related disorders.


    Importance  Parkinson disease and related disorders (PDRD) have consequences for quality of life (QoL) and are the 14th leading cause of death in the United States. Despite growing interest in palliative care (PC) for persons with PDRD, few studies are available supporting its effectiveness.

    Objective  To determine if outpatient PC is associated with improvements in patient-centered outcomes compared with standard care among patients with PDRD and their caregivers.

    Design, Setting, and Participants  This randomized clinical trial enrolled participants at 3 academic tertiary care centers between November 1, 2015, and September 30, 2017, and followed them up for 1 year. A total of 584 persons with PDRD were referred to the study. Of those, 351 persons were excluded by phone and 23 were excluded during in-person screenings. Patients were eligible to participate if they had PDRD and moderate to high PC needs. Patients were excluded if they had urgent PC needs, another diagnosis meriting PC, were already receiving PC, or were unable or unwilling to follow the study protocol. Enrolled participants were assigned to receive standard care plus outpatient integrated PC or standard care alone. Data were analyzed between November 1, 2018, and December 9, 2019.

    Interventions  Outpatient integrated PC administered by a neurologist, social worker, chaplain, and nurse using PC checklists, with guidance and selective involvement from a palliative medicine specialist. Standard care was provided by a neurologist and a primary care practitioner.

    Main Outcomes and Measures  The primary outcomes were the differences in patient quality of life (QoL; measured by the Quality of Life in Alzheimer Disease scale) and caregiver burden (measured by the Zarit Burden Interview) between the PC intervention and standard care groups at 6 months.

    Results  A total of 210 patients with PDRD (135 men [64.3%]; mean [SD] age, 70.1 [8.2] years) and 175 caregivers (128 women [73.1%]; mean [SD] age, 66.1 [11.1] years) were enrolled in the study; 193 participants (91.9%) were white and non-Hispanic. Compared with participants receiving standard care alone at 6 months, participants receiving the PC intervention had better QoL (mean [SD], 0.66 [5.5] improvement vs 0.84 [4.2] worsening; treatment effect estimate, 1.87; 95% CI, 0.47-3.27; P = .009). No significant difference was observed in caregiver burden (mean [SD], 2.3 [5.0] improvement vs 1.2 [5.6] improvement in the standard care group; treatment effect estimate, −1.62; 95% CI, −3.32 to 0.09; P = .06). Other significant differences favoring the PC intervention included nonmotor symptom burden, motor symptom severity, completion of advance directives, caregiver anxiety, and caregiver burden at 12 months. No outcomes favored standard care alone. Secondary analyses suggested that benefits were greater for persons with higher PC needs.

    Conclusions and Relevance  Outpatient PC is associated with benefits among patients with PDRD compared with standard care alone. This study supports efforts to integrate PC into PDRD care. The lack of diversity and implementation of PC at experienced centers suggests a need for implementation research in other populations and care settings.

    Trial Registration  ClinicalTrials.gov Identifier: NCT02533921