Evidence map›Paper›PMID 28000094›Full record

ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2017

Patient and caregiver goals for dementia care.

Lee A Jennings, Alina Palimaru, Maria G Corona, Xavier E Cagigas, Karina D Ramirez, Tracy Zhao, Ron D Hays, Neil S Wenger, David B Reuben

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 55 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
55citing papers in PubMed, 2 pooled it
–field-weighted citation impact
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

55 citing papers in PubMed, 2 syntheses or guidelines pooled it.

  1. Pooled it
  2. Pooled it
  3. Trial
  4. Changes over Time in Patient Stated Values and Treatment Preferences Regarding Aggressive Therapies: Insights from the DECIDE-LVAD Trial.Medical decision making : an international journal of the Society for Medical Decision Making · 2022
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  10. A program of SUPPORT-DPalliative & supportive care · 2026
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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.

Lee A JenningsReynolds Department of Geriatric Medicine, University of Oklahoma Health Sciences Center, Oklahoma, USA. lajennings@mednet.ucla.edu.ORCID 0000-0003-3624-0586
Alina PalimaruDepartment of Health Policy and Management, Fielding School of Public Health, University of California, Los Angeles, Los Angeles, CA, USA.
Maria G CoronaDepartment of Psychiatry and Biobehavioral Sciences, Semel Institute for Neuroscience and Human Behavior, University of California, Los Angeles, Los Angeles, CA, USA.
Xavier E CagigasDepartment of Psychiatry and Biobehavioral Sciences, Semel Institute for Neuroscience and Human Behavior, University of California, Los Angeles, Los Angeles, CA, USA.
Karina D RamirezMulticampus Program in Geriatric Medicine and Gerontology, Division of Geriatrics, David Geffen School of Medicine, University of California, Los Angeles, 10945 Le Conte Ave., Suite 2339, Los Angeles, CA, 90095-1687, USA.
Tracy ZhaoMulticampus Program in Geriatric Medicine and Gerontology, Division of Geriatrics, David Geffen School of Medicine, University of California, Los Angeles, 10945 Le Conte Ave., Suite 2339, Los Angeles, CA, 90095-1687, USA.
Ron D HaysDivision of General Internal Medicine and Health Services Research, David Geffen School of Medicine, University of California, Los Angeles, Los Angeles, CA, USA.
Neil S WengerDivision of General Internal Medicine and Health Services Research, David Geffen School of Medicine, University of California, Los Angeles, Los Angeles, CA, USA.
David B ReubenMulticampus Program in Geriatric Medicine and Gerontology, Division of Geriatrics, David Geffen School of Medicine, University of California, Los Angeles, 10945 Le Conte Ave., Suite 2339, Los Angeles, CA, 90095-1687, USA. dreuben@mednet.ucla.edu.

Funding

UCLA Clinical and Translational Science InstituteUL1TR000124 · NCATS · UNIVERSITY OF CALIFORNIA LOS ANGELES · PI DUBINETT, STEVEN M. · 2012 to 2015
$57.0M
The Center for Health Improvement of Minority ElderlyP30AG021684 · NIA · UNIVERSITY OF CALIFORNIA LOS ANGELES · PI CATHERINE A SARKISIAN · 2002 to 2026
$19.7M
TRAINING COREP20MD000182 · NIMHD · CHARLES R. DREW UNIVERSITY OF MED &SCI · PI CUNNINGHAM, WILLIAM EMERY, SHAPIRO, MARTIN F. · 2002 to 2016
$16.5M
UCLA OLDER AMERICANS INDEPENDENCE CENTERP30AG028748 · NIA · UNIVERSITY OF CALIFORNIA LOS ANGELES · PI MOORE, ALISON AHERN · 2006 to 2017
$9.8M
NCATS NIH HHS UL1 TR000124NIA NIH HHS P30 AG021684NIA NIH HHS P30 AG028748NIMHD NIH HHS P20 MD000182
6 · The paper itself

Abstract

purposeMost health outcome measures for chronic diseases do not incorporate specific health goals of patients and caregivers. To elicit patient-centered goals for dementia care, we conducted a qualitative study using focus groups of people with early-stage dementia and dementia caregivers.

methodsWe conducted 5 focus groups with 43 participants (7 with early-stage dementia and 36 caregivers); 15 participants were Spanish-speaking. Verbatim transcriptions were independently analyzed line-by-line by two coders using both deductive and inductive approaches. Coded texts were grouped into domains and developed into a goal inventory for dementia care.

resultsParticipants identified 41 goals for dementia care within five domains (medical care, physical quality of life, social and emotional quality of life, access to services and supports, and caregiver support). Caregiver goals included ensuring the safety of the person with dementia and managing caregiving stress. Participants with early-stage dementia identified engaging in meaningful activity (e.g., work, family functions) and not being a burden on family near the end of life as important goals. Participants articulated the need to readdress goals as the disease progressed and reported challenges in goal-setting when goals differed between the person with dementia and the caregiver (e.g., patient safety vs. living independently at home). While goals were similar among English- and Spanish-speaking participants, Spanish-speaking participants emphasized the need to improve community education about dementia.

conclusionsPatient- and caregiver-identified goals for care are different than commonly measured health outcomes for dementia. Future work should incorporate patient-centered goals into clinical settings and assess their usefulness for dementia care.

Indexed as

Quality of LifeStress, PsychologicalAdultAgedAged, 80 and overCaliforniaCaregiversCultural CharacteristicsDementiaFemaleFocus GroupsGoalsHispanic or LatinoHumansInterviews as TopicMaleDementiaGoal-oriented carePatient-centered outcomesQualitative

Identifiers

PMID28000094
PMCPMC5382930

What OpenQuestion holds

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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.