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Prognostic predictors relevant to end-of-life palliative care in Parkinson's disease and related disorders: A systematic review

Akbar, Umer; McQueen, Robert Brett; Bemski, Julienne; Carter, Julie; Goy, Elizabeth R.; Kutner, Jean; Johnson, Miriam J.; Miyasaki, Janis M.; Kluger, Benzi

Authors

Umer Akbar

Robert Brett McQueen

Julienne Bemski

Julie Carter

Elizabeth R. Goy

Jean Kutner

Janis M. Miyasaki

Benzi Kluger



Abstract

Parkinson's disease and related disorders (PDRD) are the second most common neurodegenerative disease and a leading cause of death. However, patients with PDRD receive less end-of-life palliative care (hospice) than other illnesses, including other neurologic illnesses. Identification of predictors of PDRD mortality may aid in increasing appropriate and timely referrals. To systematically review the literature for causes of death and predictors of mortality in PDRD to provide guidance regarding hospice/end-of-life palliative care referrals. We searched MEDLINE, PubMed, EMBASE and CINAHL databases (1970-2020) of original quantitative research using patient-level, provider-level or caregiver-level data from medical records, administrative data or survey responses associated with mortality, prognosis or cause of death in PDRD. Findings were reviewed by an International Working Group on PD and Palliative Care supported by the Parkinson's Foundation. Of 1183 research articles, 42 studies met our inclusion criteria. We found four main domains of factors associated with mortality in PDRD: (1) demographic and clinical markers (age, sex, body mass index and comorbid illnesses), (2) motor dysfunction and global disability, (3) falls and infections and (4) non-motor symptoms. We provide suggestions for consideration of timing of hospice/end-of-life palliative care referrals. Several clinical features of advancing disease may be useful in triggering end-of-life palliative/hospice referral. Prognostic studies focused on identifying when people with PDRD are nearing their final months of life are limited. There is further need for research in this area as well as policies that support need-based palliative care for the duration of PDRD.

Citation

Akbar, U., McQueen, R. B., Bemski, J., Carter, J., Goy, E. R., Kutner, J., Johnson, M. J., Miyasaki, J. M., & Kluger, B. (2021). Prognostic predictors relevant to end-of-life palliative care in Parkinson's disease and related disorders: A systematic review. Journal of Neurology, Neurosurgery and Psychiatry, 92(6), 629-636. https://doi.org/10.1136/jnnp-2020-323939

Journal Article Type Review
Acceptance Date Jan 12, 2021
Online Publication Date Mar 31, 2021
Publication Date 2021-06
Deposit Date May 3, 2022
Publicly Available Date May 5, 2022
Journal Journal of Neurology, Neurosurgery and Psychiatry
Print ISSN 0022-3050
Electronic ISSN 1468-330X
Publisher BMJ Publishing Group
Peer Reviewed Peer Reviewed
Volume 92
Issue 6
Pages 629-636
DOI https://doi.org/10.1136/jnnp-2020-323939
Public URL https://hull-repository.worktribe.com/output/3752703

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Publisher Licence URL
http://creativecommons.org/licenses/by-nc/4.0

Copyright Statement
© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. http://creativecommons.org/licenses/by-nc/4.0/
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.






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