Measuring quality of life in palliative care for Parkinson’s disease: a clinimetric comparison

• Type of Material: Article
• Authors: Samantha K. Holden, University of Colorado; Claire Koljack, University of Colorado; Lindsay Prizer, Emory University; Stefan H. Sillau, University of Colorado; Janis Miyasaki, University of Alberta; Benzi M. Kluger, University of Colorado
• Language: English
• Date: 2019-06-23
• Publisher: Elsevier
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © 2019 Elsevier Ltd. All rights reserved.
• License: Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International
• Final Published Version (URL): http://dx.doi.org/10.1016/j.parkreldis.2019.06.018
• Title of Journal or Parent Work: PARKINSONISM & RELATED DISORDERS
• Volume: 65
• Start Page: 172
• End Page: 177
• Grant/Funding Information: Research reported in this publication was funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (IHS-1408-20134)

Abstract

Neuropalliative care is an emerging field with high relevance to neurodegenerative conditions [1,2]. Implementation of palliative interventions for Parkinson’s disease (PD) has been increasing [3,4] given far-reaching effects of its motor and non-motor symptoms and relatively long disease duration. PD palliative care needs occur at all stages of the disease, but increase significantly at later stages, with worsening motor fluctuations, cognitive impairment, and caregiver strain [5,6]. In addition to symptomatic issues, people with PD also contend with practical problems, such as the need for better communication and education about the disease process [7]. In response, clinicians and researchers have become increasingly aware of the need for a palliative approach, including compassionate conversations around diagnosis and prognosis, discussion of goals of care and advance care planning, complex symptom management, and caregiver support, all with the goal of optimizing quality of life for the person living with PD and their loved ones.