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Palliative care and Parkinson's disease : meeting summary and recommendations for clinical research

Kluger, Benzi M.; Galifianakis, Nicholas B.; Carter, Julie H.; Johnson, Miriam J.; Richfield, Edward W.; Kutner, Jean S.; Kluger, Benzi; Bekelman, David; Kutner, Jean; Miyasaki, Janis; Fox, Siobhán; Timmons, Suzanne; Katz, Maya; Galifianakis, Nicholas; Subramanian, Indu; Carter, Julie; Johnson, Miriam; Richfield, Edward

Authors

Jean S. Kutner

Nicholas B. Galifianakis

Edward W. Richfield

Miriam J. Johnson

Julie H. Carter

Benzi M. Kluger

Benzi Kluger

Siobhán Fox

Suzanne Timmons

Maya Katz

Nicholas Galifianakis

Indu Subramanian

Julie Carter

Edward Richfield

David Bekelman

Jean Kutner

Janis Miyasaki

Abstract

Introduction: Palliative care is an approach to caring for patients and families affected by serious illnesses that focuses on the relief of suffering through the management of medical symptoms, psychosocial issues, advance care planning and spiritual wellbeing. Over the past decade there has been an emerging clinical and research interest in the application of palliative care approaches to Parkinson’s disease (PD) and outpatient palliative care services are now offered by several movement disorders centers. Methods: An International Working Group Meeting on PD and Palliative Care supported by the Parkinson’s Disease Foundation was held in October 2015 to review the current state of the evidence and to make recommendations for clinical research and practice. Results: Topics included: 1) Defining palliative care for PD; 2) Lessons from palliative care for heart failure and other chronic illnesses; 3) Patient and caregiver Needs; 4) Needs assessment tools; 5) Intervention strategies; 6) Predicting prognosis and hospice referrals; 7) Choice of appropriate outcome measures; 8) Implementation, dissemination and education research; and 9) Need for research collaborations. We provide an overview of these discussions, summarize current evidence and practices, highlight gaps in our knowledge and make recommendations for future research. Conclusions: Palliative Care for PD is a rapidly growing area which holds great promise for improving outcomes for PD patients and their caregivers. While clinical research in this area can build from lessons learned in other diseases, there is a need for observational, methodological and interventional research to address the unique needs of PD patients and caregivers.

Journal Article Type Conference Paper
Publication Date Apr 1, 2017
Journal Parkinsonism and related disorders
Print ISSN 1353-8020
Electronic ISSN 1873-5126
Publisher Elsevier
Peer Reviewed Peer Reviewed
Volume 37
Pages 19-26
Institution Citation Kluger, B. M., Galifianakis, N. B., Carter, J. H., Johnson, M. J., Richfield, E. W., Kutner, J. S., …Miyasaki, J. (2017). Palliative care and Parkinson's disease : meeting summary and recommendations for clinical research. Parkinsonism and Related Disorders, 37, (19-26). doi:10.1016/j.parkreldis.2017.01.008. ISSN 1353-8020
DOI https://doi.org/10.1016/j.parkreldis.2017.01.008
Keywords Palliative care; Parkinson's disease; Clinical research
Publisher URL http://www.sciencedirect.com/science/article/pii/S1353802017300081
Copyright Statement © 2018. This manuscript version is made available under the CC-BY-NC-ND 4.0 license http://creativecommons.org/licenses/by-nc-nd/4.0/
Additional Information This article is maintained by: Elsevier; Article Title: Palliative care and Parkinson's disease: Meeting summary and recommendations for clinical research; Journal Title: Parkinsonism & Related Disorders; CrossRef DOI link to publisher maintained version: http://dx.doi.org/10.10...parkreldis.2017.01.008; Content Type: article; Copyright: © 2017 Elsevier Ltd. All rights reserved.

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Copyright Statement
© 2018. This manuscript version is made available under the CC-BY-NC-ND 4.0 license http://creativecommons.org/licenses/by-nc-nd/4.0/




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