Evidence map›Paper›PMID 35551085›Full record

ArticleBMJ open2022

Advance care planning in amyotrophic lateral sclerosis (ALS): study protocol for a qualitative longitudinal study with persons with ALS and their family carers.

Isabel Vandenbogaerde, Rose Miranda, Jan L De Bleecker, Emma Carduff, Agnes van der Heide, Lieve Van den Block, Luc Deliens, Aline De Vleminck

Open access · goldAbstract read
In one paragraph

Article in BMJ open, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
0.7field-weighted citation impact, top 28% 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

2 citing papers in PubMed, 6 citations in OpenAlex.

  1. Article
  2. Article
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

8 authors at 4 institutions in 3 countries.

Isabel VandenbogaerdeEnd-of-Life Care Research Group, Vrije Universiteit Brussel & Universiteit Gent, Brussel, Belgium isabel.vandenbogaerde@vub.be.ORCID 0000-0001-6943-8092
Rose MirandaEnd-of-Life Care Research Group, Vrije Universiteit Brussel & Universiteit Gent, Brussel, Belgium.ORCID 0000-0001-6580-6548
Jan L De BleeckerDepartment of Neurology and Neuromuscular Reference Center, Universitair Ziekenhuis Gent, Gent, Belgium.
Emma CarduffMarie Curie Hospice Glasgow, Glasgow, Scotland, UK.
Agnes van der HeideDepartment of Public Health, Erasmus MC, University Medical Centre Rotterdam, Rotterdam, Zuid-Holland, The Netherlands.
Lieve Van den BlockEnd-of-Life Care Research Group, Vrije Universiteit Brussel & Universiteit Gent, Brussel, Belgium.
Luc DeliensEnd-of-Life Care Research Group, Vrije Universiteit Brussel & Universiteit Gent, Brussel, Belgium.
Aline De VleminckEnd-of-Life Care Research Group, Vrije Universiteit Brussel & Universiteit Gent, Brussel, Belgium.
Vrije Universiteit Brussel · BEErasmus MC · NLGhent University Hospital · BEMarie Curie Hospice · GB

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionAmyotrophic lateral sclerosis (ALS) is an incurable motor neuron degenerative disease that has rapid progression and is associated with cognitive impairment. For people with ALS (pALS) and their family carers, advance care planning (ACP) is beneficial, as it can lead to feelings of control/relief and refusal of unwanted treatments. However, evidence concerning the experiences and preferences regarding ACP of pALS and their family carers, especially when their symptoms progress, is scarce. This article describes the protocol for a qualitative longitudinal study that aims to explore: (1) the experiences with ACP and the preferences for future care and treatment of pALS and their family carers and (2) how these experiences and preferences change over time. METHODS AND ANALYSIS: A qualitative, longitudinal, multiperspective design. A total of eight to nine dyads (pALS and their family carers) will be recruited, and semistructured interviews administered every 3 months over a 9-month period. Qualitative longitudinal analysis involves content analysis via in-depth reading, followed by a two-step timeline method to describe changes in experiences and preferences within and across participants. ETHICS AND DISSEMINATION: This protocol has been approved by the central ethical committee of the University Hospital of Brussels, and local ethical committees of the other participating hospitals (B.U.N. B1432020000128). The results will be disseminated via the research group's (endoflifecare.be) website, social media and newsletter and via presentations at national and international scientific conferences.

Indexed as

Advance Care PlanningAmyotrophic Lateral SclerosisCaregiversHumansLongitudinal StudiesQualitative Researchadult palliative caremotor neurone diseasequalitative research

Identifiers

PMID35551085
PMCPMC9109106
OpenAlexW4280574355

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
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.