Evidence map›Paper›PMID 33435952›Full record

ArticleBMC palliative care2021

Gaining insight into the views of outpatients with Huntington's disease regarding their future and the way they deal with their poor prognosis: a qualitative study.

Marina R Ekkel, Marja F I A Depla, Els M L Verschuur, Ruth B Veenhuizen, Cees M P M Hertogh, Bregje D Onwuteaka-Philipsen

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

Article in BMC palliative care, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed
0.7field-weighted citation impact, top 38% 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

6 citing papers in PubMed, 12 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

6 authors at 4 institutions in 1 country.

Marina R EkkelDepartment of Medicine for Older People, Amsterdam Public Health Research Institute (APH), Amsterdam UMC, Vrije Universiteit Amsterdam, PO Box 7057, 1007 MB, Amsterdam, The Netherlands. m.ekkel@amsterdamumc.nl.ORCID http://orcid.org/0000-0002-1606-694X
Marja F I A DeplaDepartment of Medicine for Older People, Amsterdam Public Health Research Institute (APH), Amsterdam UMC, Vrije Universiteit Amsterdam, PO Box 7057, 1007 MB, Amsterdam, The Netherlands.
Els M L VerschuurSchool of Health Studies, HAN University of Applied Sciences, Nijmegen, The Netherlands.
Ruth B VeenhuizenDepartment of Medicine for Older People, Amsterdam Public Health Research Institute (APH), Amsterdam UMC, Vrije Universiteit Amsterdam, PO Box 7057, 1007 MB, Amsterdam, The Netherlands.
Cees M P M HertoghDepartment of Medicine for Older People, Amsterdam Public Health Research Institute (APH), Amsterdam UMC, Vrije Universiteit Amsterdam, PO Box 7057, 1007 MB, Amsterdam, The Netherlands.
Bregje D Onwuteaka-PhilipsenDepartment of Public and Occupational Health, Amsterdam Public Health Research Institute (APH), Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands.
Amsterdam University Medical Centers · NLAmsterdam Neuroscience · NLHAN University of Applied Sciences · NLVrije Universiteit Amsterdam · NL

Funding

Atlant naPieter van Foreest Stichting naStichting Vermogensbeheer Hoogeland Zorg na
6 · The paper itself

Abstract

backgroundHuntington's disease (HD) has a poor prognosis. Decision-making capacity and communication ability may become lost as the disease progresses. Therefore, HD patients are encouraged to engage in advance care planning (ACP). To improve ACP for HD patients, there is a need to better understand how these patients face their poor prognosis.

aimTo gain insight into the views of HD patients who receive outpatient care regarding their future and the way they deal with the poor prognosis of their disease.

methodsA qualitative study using semi-structured interviews with 12 patients with HD (7 outpatient clinic, 3 day care, 2 assisted living facility). Audio-recorded interviews were transcribed verbatim. Through reading and re-reading interviews, writing memos and discussions in the research team, strategies were identified.

resultsThree strategies emerged for facing a future with HD. Participants saw the future: 1) as a period that you have to prepare for; 2) as a period that you would rather not think about; 3) as a period that you do not have to worry about yet. Participants could adopt more than one strategy at a time. Even though participants realized that they would deteriorate and would need more care in the future, they tried to keep this knowledge 'at a distance', with the motivation of keeping daily life as manageable as possible.

conclusionsOfficial ACP guidelines recommend discussing goals and preferences for future treatment and care, but patients tend to want to live in the present. Further research is needed to elucidate the best approach to deal with this discrepancy.

Indexed as

Advance Care PlanningAttitude to HealthGoalsHuntington DiseaseAdultAgedAged, 80 and overAmbulatory CareAssisted Living FacilitiesDay Care, MedicalEuthanasia, Active, VoluntaryFemaleHumansMaleMiddle AgedMotivationAdvance care planningHuntington’s diseaseNeurodegenerative diseasePatients’ perspectivesQualitative research

Identifiers

PMID33435952
PMCPMC7802313
OpenAlexW3118921033

What OpenQuestion holds

Textmetadata
LicenceCC BY
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.