Evidence map›Paper›PMID 32036671›Full record

ArticleAnnals of palliative medicine2020

Optimizing future planning in Parkinson disease: suggestions for a comprehensive roadmap from patients and care partners.

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

Open access · diamondAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Annals of palliative medicine, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 29 papers, 4 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
29citing papers in PubMed, 4 pooled it
10.4field-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

29 citing papers in PubMed, 4 syntheses or guidelines pooled it, 54 citations in OpenAlex.

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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors at 5 institutions in 2 countries.

Sarah R JordanDivision of Geriatric Medicine, Department of Medicine, University of Colorado Anschutz Medical Campus, Aurora, Colorado, USA.
Benzi KlugerDepartments of Neurology and Medicine, University of Rochester Medical Center, Rochester, NY, USA.
Roman AyeleDenver-Seattle Center of Innovation, Rocky Mountain Regional Veterans Affairs Medical Center, Aurora, Colorado, USA; College of Nursing, University of Colorado Anschutz Medical Campus, Aurora, Colorado, USA.
Adreanne BrungardtDivision of Geriatric Medicine, Department of Medicine, University of Colorado Anschutz Medical Campus, Aurora, Colorado, USA.
Anne HallResearch Stakeholder, University of California, San Francisco, CA, USA.
Jacqueline JonesCollege of Nursing, University of Colorado Anschutz Medical Campus, Aurora, Colorado, USA.
Maya KatzMovement Disorders and Neuromodulation Center, University of California, San Francisco, CA, USA.
Janis M MiyasakiDivision of Neurology, University of Alberta, Edmonton, Alberta, Canada.
Hillary D LumDivision of Geriatric Medicine, Department of Medicine, University of Colorado Anschutz Medical Campus, Aurora, Colorado, USA; VA Eastern Colorado Geriatric Research Education and Clinical Center, Aurora, Colorado, USA. Hillary.lum@cuanschutz.edu.
University of Colorado Anschutz Medical Campus · USUniversity of California, San Francisco · USUniversity of Alberta · CAUniversity of Rochester Medical Center · USVA Eastern Colorado Health Care System · 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 NR014637Patient-Centered Outcomes Research Institute IHS-1408-20134
6 · The paper itself

Abstract

backgroundLiving with Parkinson disease (PD) is complicated by an unpredictable disease course which can delay planning for future needs. This study explores patient and care partner needs related to future planning using a palliative care framework with physical, psychological, social, cultural, end-of-life, and ethical aspects of care in PD to guide analysis.

methodsSecondary analysis of patient and care partner interviews from a randomized clinical trial comparing interdisciplinary outpatient palliative care versus standard care for individuals with PD and care partners in an academic setting. Sixty participants were interviewed (30 patients and 30 care partners) about needs related to future planning. Team-based thematic analysis was used to identify key themes.

resultsMany care partners and patients living with PD described a desire for information about what to expect and how to plan for the future. Participants posed multiple questions about PD progression and devised the metaphor of a "roadmap" as a guide for decision making and planning. When exploring the concept of a PD roadmap, five themes emerged: (I) desire for a comprehensive tool for future planning, such as a roadmap, (II) care partner preferences for specific future planning, (III) PD-related life changes as opportunity for future planning and decision-making, (IV) cues from family, peers, and medical professionals about "location" on the roadmap, and (V) opportunities and challenges to integrating a PD roadmap into patient-centered care.

conclusionsPatients and care partners described key needs related to future planning that can inform a comprehensive roadmap to assist with education, communication, and decision making. A roadmap tool can promote individualized anticipatory guidance and multidimensional shared decision-making discussions between patients, care partners, and the healthcare team related to PD progression.

Indexed as

Advance Care PlanningPalliative CareAgedCaregiversFemaleHumansInterviews as TopicMaleMiddle AgedParkinson DiseaseCaregiverdecision-makingpalliative careParkinson disease (PD)qualitative

Identifiers

PMID32036671
PMCPMC7408313
OpenAlexW3005477357

What OpenQuestion holds

Textmetadata
LicenceTDM
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.