Understanding advance care planning in patients and care partners living with Parkinson’s disease

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Understanding advance care planning in patients and care partners living with Parkinson’s disease
Lum, Hillary. 2022. "Understanding advance care planning in patients and care partners living with Parkinson’s disease". Qualitative Data Repository. https://doi.org/10.5064/F6GZGCJB. Palliative Care Research Cooperative QDR. V1
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Description

Project Summary

Objective: Advance care planning (ACP) is a core quality measure in caring for individuals with Parkinson disease (PD) and there are no best practice standards for how to incorporate ACP into PD care. This study describes patient and care partner perspectives on ACP to inform a patient- and care partner-centered framework for clinical care.

Methods: This is a qualitative descriptive study of 30 patients with PD and 30 care partners within a multisite, randomized clinical trial of neuropalliative care compared to standard care. Participants were individually interviewed about perspectives on ACP, including prior and current experiences, barriers to ACP, and suggestions for integration into care. Interviews were analyzed using theme analysis to identify key themes.

Data Overview

Sixty-seven interview transcripts from 60 participants including individuals with Parkinson Disease (n=30) or care partners of individuals with PD (n=30). Interviews were conducted at the 12-month follow up after Dr. Benzi Kluger's PCORI-funded three-site RCT of outpatient palliative care compared to usual care. Interviews specifically probed on patient-care-partner-palliative care/usual neurological care communication and advance care planning. Three sites are: University of California San Francisco (UCSF); University of Alberta (Alberta); University of Colorado Denver/Anschutz Medical Campus (UCD)

Interviews were conducted by trained qualitative research assistants (not involved in the intervention) between September 2017 and March 2018. During this period, 137 participants (81 patients and 56 care partners) had reached the 12-month visit. The study planned a goal of 60 interviews to allow sufficient opportunity to sample across trial sites and across participant type (patient or care partner). Patients and care partners were purposefully selected for interviews from each site, study arm, and sex to ensure representation across these populations. Other efforts to maximize the variance in the sample included specifically including individuals with cognitive impairment, high disease severity (based on Hoehn & Yahr score), or lacking a care partner. All participants, whether a patient or care partner, were interviewed separately. In some cases, multiple interviews were conducted due to a) participant preference, or b) additional probing related to advance care planning or other palliative care topics.

Subject Medicine, Health and Life Sciences
Keyword Parkinson's disease, advance care planning, Palliative treatment, Caregivers
Related Publication Framing advance care planning in Parkinson disease: Patient and care partner perspectives. Lum HD, Jordan SR, Brungardt A, Ayele R, Katz M, Miyasaki JM, Hall A, Jones J, Kluger B. Neurology. 2019 May 28;92(22):e2571-e2579. doi: 10.1212/WNL.0000000000007552. Epub 2019 Apr 26. PMID: 31028124 doi: 10.1212/WNL.0000000000007552
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