Evidence map›Paper›PMID 36448241›Full record

ArticleAnnals of clinical and translational neurology2022

Well-being on supportive techniques in amyotrophic lateral sclerosis: from neurologists' perspective.

Krzysztof Barć, Dorothée Lulé, Julia Finsel, Olga Helczyk, Susanne Baader, Helena Aho-Özhan, Albert C Ludolph, Magdalena Kuźma-Kozakiewicz

Open access · goldAbstract read
In one paragraph

Article in Annals of clinical and translational neurology, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
0.5field-weighted citation impact, top 33% 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

3 citing papers in PubMed, 4 citations in OpenAlex.

  1. Article
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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

8 authors at 2 institutions in 2 countries.

Krzysztof BarćDepartment of Neurology, University Clinical Centre of Medical University of Warsaw, Warsaw, Poland.ORCID https://orcid.org/0000-0001-9668-6446
Dorothée LuléDepartment of Neurology, University of Ulm, Ulm, Germany.ORCID https://orcid.org/0000-0001-5944-398X
Julia FinselDepartment of Neurology, University of Ulm, Ulm, Germany.
Olga HelczykDepartment of Neurology, University of Ulm, Ulm, Germany.
Susanne BaaderDepartment of Neurology, University of Ulm, Ulm, Germany.
Helena Aho-ÖzhanDepartment of Neurology, University of Ulm, Ulm, Germany.
Albert C LudolphDepartment of Neurology, University of Ulm, Ulm, Germany.ORCID https://orcid.org/0000-0002-5401-0904
Magdalena Kuźma-KozakiewiczDepartment of Neurology, Medical University of Warsaw, Warsaw, Poland.ORCID https://orcid.org/0000-0002-9676-1263
Universität Ulm · DEMedical University of Warsaw · PL

Funding

ERA-NET-E-Rare 3/IV/MAXOMOD/11/2020FTLDc O1GI1007AMND-Net 01GM1103ANEEDSinALS 01ED1405PaCeMed 01DS18031
6 · The paper itself

Abstract

objectiveTo investigate intercultural neurologists' perception of well-being in patients with amyotrophic lateral sclerosis (ALS) using gastrostomy (PEG), non-invasive, and/or invasive ventilation (NIV/IV) and to analyse the determinants and impact on the management of the above medical interventions (MIs).

methodsThe study was based on anonymous questionnaires addressing the clinical approach and personal attitude towards the use of PEG, NIV and IV in ALS patients completed by 465 neurologists: 228 from Germany and 237 from Poland.

resultsThe German and Polish neurologists estimated the quality of life in ALS patients using PEG and NIV as neutral, whilst low in individuals using IV. A regression model revealed an independent influence of palliative care training (PCT) and age on that attitude in the German group. Higher values of estimated patients' depressiveness on PEG, NIV and IV were found amongst the Polish neurologists. Marital status, experience in ALS and being a parent independently influenced the perception of patients' depressiveness in the German, whilst marital status, age and PCT were factors in the Polish group. Amongst German neurologists, a higher perception of patients' depressiveness in individuals using PEG, NIV and IV was linked to the later timing of the MIs discussion. In the Polish group, it was a lower estimation of QoL in patients using PEG.

conclusionNeurologists' perception of ALS patients' well-being on MIs reflects their demographic status, professional experience and potentially their cultural background. This perception plays an important role in the timing of MIs discussion, possibly influencing the decision-making process.

Indexed as

Amyotrophic Lateral SclerosisGastrostomyHumansNeurologistsQuality of LifeSurveys and Questionnaires

Identifiers

PMID36448241
PMCPMC9735360
OpenAlexW4310466464

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
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.