Evidence map›Paper›PMID 31028124›Full record

Trial reportNeurology2019

Framing advance care planning in Parkinson disease: Patient and care partner perspectives.

Hillary D Lum, Sarah R Jordan, Adreanne Brungardt, Roman Ayele, Maya Katz, Janis M Miyasaki, Anne Hall, Jacqueline Jones, Benzi Kluger

Open access · bronzeAbstract readMulticenter StudyRandomized Controlled Trial
PubMed Full text at PMC Publisher
In one paragraph

Trial report in Neurology, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 42 papers, 4 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
42citing papers in PubMed, 4 pooled it
8.4field-weighted citation impact, top 2% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

42 citing papers in PubMed, 4 syntheses or guidelines pooled it, 72 citations in OpenAlex.

  1. Pooled it
  2. Pooled it
  3. Pooled it
  4. Pooled it
  5. Improving Advance Care Planning for People with Parkinson's.Movement disorders clinical practice · 2026
    Article
  6. Review
  7. Review
  8. Article
  9. Article
  10. Article
  11. Article
  12. Article
  13. Article
  14. Article
  15. Article
  16. Article
  17. Article
  18. Article
  19. Article
  20. Article
4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

9 authors at 3 institutions in 1 country.

Hillary D LumFrom the Division of Geriatric Medicine, Department of Medicine (H.D.L., S.R.J., A.B.), College of Nursing (R.A., J.J.), and Department of Neurology (B.K.), University of Colorado Anschutz Medical Campus, Aurora; VA Eastern Colorado Geriatric Research Education and Clinical Center (H.D.L.); Denver-Seattle Center of Innovation (R.A.), Rocky Mountain Regional Veterans Affairs Medical Center, Denver, CO; Movement Disorders and Neuromodulation Center (M.K.) and Research Stakeholder (A.H.), University of California, San Francisco; and Division of Neurology (J.M.M.), University of Alberta, Edmonton, Canada. Hillary.lum@ucdenver.edu.
Sarah R JordanFrom the Division of Geriatric Medicine, Department of Medicine (H.D.L., S.R.J., A.B.), College of Nursing (R.A., J.J.), and Department of Neurology (B.K.), University of Colorado Anschutz Medical Campus, Aurora; VA Eastern Colorado Geriatric Research Education and Clinical Center (H.D.L.); Denver-Seattle Center of Innovation (R.A.), Rocky Mountain Regional Veterans Affairs Medical Center, Denver, CO; Movement Disorders and Neuromodulation Center (M.K.) and Research Stakeholder (A.H.), University of California, San Francisco; and Division of Neurology (J.M.M.), University of Alberta, Edmonton, Canada.
Adreanne BrungardtFrom the Division of Geriatric Medicine, Department of Medicine (H.D.L., S.R.J., A.B.), College of Nursing (R.A., J.J.), and Department of Neurology (B.K.), University of Colorado Anschutz Medical Campus, Aurora; VA Eastern Colorado Geriatric Research Education and Clinical Center (H.D.L.); Denver-Seattle Center of Innovation (R.A.), Rocky Mountain Regional Veterans Affairs Medical Center, Denver, CO; Movement Disorders and Neuromodulation Center (M.K.) and Research Stakeholder (A.H.), University of California, San Francisco; and Division of Neurology (J.M.M.), University of Alberta, Edmonton, Canada.
Roman AyeleFrom the Division of Geriatric Medicine, Department of Medicine (H.D.L., S.R.J., A.B.), College of Nursing (R.A., J.J.), and Department of Neurology (B.K.), University of Colorado Anschutz Medical Campus, Aurora; VA Eastern Colorado Geriatric Research Education and Clinical Center (H.D.L.); Denver-Seattle Center of Innovation (R.A.), Rocky Mountain Regional Veterans Affairs Medical Center, Denver, CO; Movement Disorders and Neuromodulation Center (M.K.) and Research Stakeholder (A.H.), University of California, San Francisco; and Division of Neurology (J.M.M.), University of Alberta, Edmonton, Canada.
Maya KatzFrom the Division of Geriatric Medicine, Department of Medicine (H.D.L., S.R.J., A.B.), College of Nursing (R.A., J.J.), and Department of Neurology (B.K.), University of Colorado Anschutz Medical Campus, Aurora; VA Eastern Colorado Geriatric Research Education and Clinical Center (H.D.L.); Denver-Seattle Center of Innovation (R.A.), Rocky Mountain Regional Veterans Affairs Medical Center, Denver, CO; Movement Disorders and Neuromodulation Center (M.K.) and Research Stakeholder (A.H.), University of California, San Francisco; and Division of Neurology (J.M.M.), University of Alberta, Edmonton, Canada.
Janis M MiyasakiFrom the Division of Geriatric Medicine, Department of Medicine (H.D.L., S.R.J., A.B.), College of Nursing (R.A., J.J.), and Department of Neurology (B.K.), University of Colorado Anschutz Medical Campus, Aurora; VA Eastern Colorado Geriatric Research Education and Clinical Center (H.D.L.); Denver-Seattle Center of Innovation (R.A.), Rocky Mountain Regional Veterans Affairs Medical Center, Denver, CO; Movement Disorders and Neuromodulation Center (M.K.) and Research Stakeholder (A.H.), University of California, San Francisco; and Division of Neurology (J.M.M.), University of Alberta, Edmonton, Canada.
Anne HallFrom the Division of Geriatric Medicine, Department of Medicine (H.D.L., S.R.J., A.B.), College of Nursing (R.A., J.J.), and Department of Neurology (B.K.), University of Colorado Anschutz Medical Campus, Aurora; VA Eastern Colorado Geriatric Research Education and Clinical Center (H.D.L.); Denver-Seattle Center of Innovation (R.A.), Rocky Mountain Regional Veterans Affairs Medical Center, Denver, CO; Movement Disorders and Neuromodulation Center (M.K.) and Research Stakeholder (A.H.), University of California, San Francisco; and Division of Neurology (J.M.M.), University of Alberta, Edmonton, Canada.
Jacqueline JonesFrom the Division of Geriatric Medicine, Department of Medicine (H.D.L., S.R.J., A.B.), College of Nursing (R.A., J.J.), and Department of Neurology (B.K.), University of Colorado Anschutz Medical Campus, Aurora; VA Eastern Colorado Geriatric Research Education and Clinical Center (H.D.L.); Denver-Seattle Center of Innovation (R.A.), Rocky Mountain Regional Veterans Affairs Medical Center, Denver, CO; Movement Disorders and Neuromodulation Center (M.K.) and Research Stakeholder (A.H.), University of California, San Francisco; and Division of Neurology (J.M.M.), University of Alberta, Edmonton, Canada.
Benzi KlugerFrom the Division of Geriatric Medicine, Department of Medicine (H.D.L., S.R.J., A.B.), College of Nursing (R.A., J.J.), and Department of Neurology (B.K.), University of Colorado Anschutz Medical Campus, Aurora; VA Eastern Colorado Geriatric Research Education and Clinical Center (H.D.L.); Denver-Seattle Center of Innovation (R.A.), Rocky Mountain Regional Veterans Affairs Medical Center, Denver, CO; Movement Disorders and Neuromodulation Center (M.K.) and Research Stakeholder (A.H.), University of California, San Francisco; and Division of Neurology (J.M.M.), University of Alberta, Edmonton, Canada.
Denver VA Medical Center · USGeriatric Research Education and Clinical Center · USUniversity of California, San Francisco · US

Funding

Refinement and Expansion of the Palliative Care Research Cooperative Group (PCRC)U24NR014637 · NINR · DUKE UNIVERSITY · PI KUTNER, JEAN S, POLLAK, KATHRYN I · 2013 to 2017
$9.6M
Palliative Care Research Cooperative Group (PCRC): Refinement and ExpansionU2CNR014637 · NINR · UNIVERSITY OF COLORADO DENVER · PI RITCHIE, CHRISTINE S · 2018 to 2022
$8.6M
Refining an Advance Care Planning Group Visit intervention – a novel intervention to engage older adults in advance care planningK76AG054782 · NIA · UNIVERSITY OF COLORADO DENVER · PI LUM, HILLARY · 2016 to 2019
$864k
NIA NIH HHS K76 AG054782NINR NIH HHS U24 NR014637NINR NIH HHS U2C NR014637
6 · The paper itself

Abstract

objectiveAdvance 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.

methodsThis 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.

resultsFour themes illustrate how patients and care partners perceive ACP as part of clinical care: (1) personal definitions of ACP vary in the context of PD; (2) patient, relationship, and health care system barriers exist to engaging in ACP; (3) care partners play an active role in ACP; (4) a palliative care approach positively influences ACP. Taken together, the themes support clinician initiation of ACP discussions and interdisciplinary approaches to help patients and care partners overcome barriers to ACP.

conclusionsACP in PD may be influenced by patient and care partner perceptions and misperceptions, symptoms of PD (e.g., apathy, cognitive dysfunction, disease severity), and models of clinical care. Optimal engagement of patients with PD and care partners in ACP should proactively address misperceptions of ACP and utilize clinic teams and workflow routines to incorporate ACP into regular care.

Indexed as

Advance Care PlanningAgedCaregiversFemaleHealth CommunicationHealth Knowledge, Attitudes, PracticeHumansInterviews as TopicMalePalliative CareParkinson DiseasePatient-Centered CareQualitative Research

Identifiers

PMID31028124
PMCPMC6556088
OpenAlexW2941449847

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.