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

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          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.

          Abstract

          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

          Abstract

          This randomized clinical trial examines whether outpatient integrated palliative care is associated with patient-centered outcomes and caregiver burden compared with standard care alone among patients with Parkinson disease and related disorders and their caregivers.

          Related collections

          Most cited references30

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          The Zarit Burden Interview: a new short version and screening version.

          The purpose of the study was to develop a short and a screening version of the Zarit Burden Interview (ZBI) that would be suitable across diagnostic groups of cognitively impaired older adults, and that could be used for cross-sectional, longitudinal, and intervention studies. We used data from 413 caregivers of cognitively impaired older adults referred to a memory clinic. We collected information on caregiver burden with the 22-item ZBI, and information about dependence in activities of daily living (ADLs) and the frequency of problem behaviors among care recipients. We used factor analysis and item-total correlations to reduce the number of items while taking into consideration diagnosis and change scores. We produced a 12-item version (short) and a 4-item version (screening) of the ZBI. Correlations between the short and the full version ranged from 0.92 to 0.97, and from 0.83 to 0.93 for the screening version. Correlations between the three versions and ADL and problem behaviors were similar. We further investigated the behavior of the short version with a two-way analysis of variance and found that it produced identical results to the full version. The short and screening versions of the ZBI produced results comparable to those of the full version. Reducing the number of items did not affect the properties of the ZBI, and it may lead to easier administration of the instrument.
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            The Zarit Burden Interview

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              Neurologist care in Parkinson disease: a utilization, outcomes, and survival study.

              To investigate the utilization of neurologist providers in the treatment of patients with Parkinson disease (PD) in the United States and determine whether neurologist treatment is associated with improved clinical outcomes. This was a retrospective observational cohort study of Medicare beneficiaries with PD in the year 2002. Multilevel logistic regression was used to determine which patient characteristics predicted neurologist care between 2002 and 2005 and compare the age, race, sex, and comorbidity-adjusted annual risk of skilled nursing facility placement and hip fracture between neurologist- and primary care physician-treated patients with PD. Cox proportional hazards models were used to determine the adjusted 6-year risk of death using incident PD cases, stratified by physician specialty. More than 138,000 incident PD cases were identified. Only 58% of patients with PD received neurologist care between 2002 and 2005. Race and sex were significant demographic predictors of neurologist treatment: women (odds ratio [OR] 0.78, 95% confidence interval [CI] 0.76-0.80) and nonwhites (OR 0.83, 95% CI 0.79-0.87) were less likely to be treated by a neurologist. Neurologist-treated patients were less likely to be placed in a skilled nursing facility (OR 0.79, 95% CI 0.77-0.82) and had a lower risk of hip fracture (OR 0.86, 95% CI 0.80-0.92) in logistic regression models that included demographic, clinical, and socioeconomic covariates. Neurologist-treated patients also had a lower adjusted likelihood of death (hazard ratio 0.78, 95% CI 0.77-0.79). Women and minorities with PD obtain specialist care less often than white men. Neurologist care of patients with PD may be associated with improved selected clinical outcomes and greater survival.
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                Author and article information

                Journal
                JAMA Neurol
                JAMA Neurol
                JAMA Neurol
                JAMA Neurology
                American Medical Association
                2168-6149
                2168-6157
                May 2020
                10 February 2020
                10 February 2020
                : 77
                : 5
                : 1-11
                Affiliations
                [1 ]Department of Neurology, Anschutz Medical Campus, University of Colorado, Denver, Aurora
                [2 ]Now with Department of Neurology, University of Rochester Medical Center, Rochester, New York
                [3 ]Department of Neurology, University of Alberta, Edmonton, Alberta, Canada
                [4 ]Department of Neurology, University of California, San Francisco, San Francisco
                [5 ]Division of Palliative Medicine, Department of Medicine, University of California, San Francisco, San Francisco
                [6 ]Department of Biostatistics and Informatics, School of Public Health, University of Colorado, Aurora
                [7 ]Division of General Internal Medicine, Department of Medicine, School of Medicine, University of Colorado, Aurora
                Author notes
                Article Information
                Accepted for Publication: November 19, 2019.
                Published Online: February 10, 2020. doi:10.1001/jamaneurol.2019.4992
                Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2020 Kluger BM et al. JAMA Neurology.
                Corresponding Author: Benzi M. Kluger, MD, Department of Neurology, Anschutz Medical Campus, University of Colorado, Denver, 12631 E 17th Ave, Mail Stop B-185, Aurora, CO 80045 ( benzi.kluger@ 123456ucdenver.edu ).
                Author Contributions: Drs Kluger and Sillau had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.
                Concept and design: Kluger, Miyasaki, Katz, Galifianakis, Pantilat, Friedman, Long, Fairclough, Sillau.
                Acquisition, analysis, or interpretation of data: Kluger, Miyasaki, Katz, Galifianakis, Hall, Pantilat, Khan, Cernik, Goto, Fairclough, Sillau, Kutner.
                Drafting of the manuscript: Kluger, Katz, Goto, Sillau.
                Critical revision of the manuscript for important intellectual content: Kluger, Miyasaki, Katz, Galifianakis, Hall, Pantilat, Khan, Friedman, Cernik, Long, Fairclough, Sillau, Kutner.
                Statistical analysis: Fairclough, Sillau.
                Obtained funding: Kluger.
                Administrative, technical, or material support: Kluger, Miyasaki, Hall, Pantilat, Khan, Friedman, Cernik, Long, Kutner.
                Supervision: Kluger, Miyasaki, Katz, Galifianakis, Pantilat, Goto.
                Conflict of Interest Disclosures: Dr Kluger reported receiving grants from the Patient-Centered Outcomes Research Institute during the conduct of the study. Dr Miyasaki reported receiving grants from the Patient-Centered Outcomes Research Institute during the conduct of the study, and receiving grants from Allergan, Merz Pharma, and the University Hospital Foundation and serving as a consultant for GE Pharmaceuticals and Sunovion Pharmaceuticals outside the submitted work. Dr Pantilat reported receiving grants from the Archstone Foundation, the California Health Care Foundation, the Cambia Health Foundation, the Gordon and Betty Moore Foundation, the National Institute of Nursing Research, the Patient-Centered Outcomes Research Institute, the Stupski Foundation, and the UniHealth Foundation during the conduct of the study. Dr Khan reported receiving grants from the Patient-Centered Outcomes Research Institute during the conduct of the study. Dr Friedman reported receiving grants from the Patient-Centered Outcomes Research Institute during the conduct of the study. Dr Sillau reported receiving grants from the Patient-Centered Outcomes Research Institute during the conduct of the study. No other disclosures were reported.
                Funding/Support: This study was supported by grant IHS-1408-20134 from the Patient-Centered Outcomes Research Institute. This work was supported through a Patient-Centered Outcomes Research Institute (PCORI) Project Program Award IHS-1408-20134.
                Role of the Funder/Sponsor: The funding sources had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.
                Disclaimer: All statements in this report, including its findings and conclusions, are solely those of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors, or Methodology Committee.
                Data Sharing Statement: See Supplement 3.
                Additional Contributions: Laura Palmer, BS, of the University of Colorado, served as project coordinator. The following contributors served as study coordinators: Etta Abaca, RN, of the University of Colorado; Francis Cheung, BSc, of the University of Alberta; and Lorna Beccariam RN, BSN, CDE, CCRC, Nieves Lopez-Barrera, MD, Kevin Park, MBBS, Jana Guenther, BA, and Raisa Syed, BS, of the University of California San Francisco. Candace Ellman, MA, from the University of Colorado, provided administrative support. All contributors were compensated for their assistance. We would like to thank the many patients and families who participated in the study.
                Article
                noi190116
                10.1001/jamaneurol.2019.4992
                7042842
                32040141
                cc6bf0d2-c2b4-4303-a34c-15061949e123
                Copyright 2020 Kluger BM et al. JAMA Neurology.

                This is an open access article distributed under the terms of the CC-BY License.

                History
                : 23 September 2019
                : 19 November 2019
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