Evidence map›Paper›PMID 31391247›Full record

Observational studyNeurology2019

An observational study on quality of life and preferences to sustain life in locked-in state.

Magdalena Kuzma-Kozakiewicz, Peter M Andersen, Katarzyna Ciecwierska, Cynthia Vázquez, Olga Helczyk, Markus Loose, Ingo Uttner, Albert C Ludolph, Dorothée Lulé

Open access · bronzeAbstract readObservational Study
PubMed Full text at PMC Publisher
In one paragraph

Observational study in Neurology, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 38 papers.

0numbers the graph read from it
0cells of the map it votes in
38citing papers in PubMed
14.5field-weighted citation impact, top 1% 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

38 citing papers in PubMed, 65 citations in OpenAlex.

  1. Article
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  4. Disability, Quality of Life, and Vitalism in End-of-Life Care.HEC forum : an interdisciplinary journal on hospitals' ethical and legal issues · 2025
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  19. Religiosity in patients with amyotrophic lateral sclerosis, a cross-country comparison.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2023
    Article
  20. Review
4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

9 authors at 1 institution in 1 country.

Magdalena Kuzma-KozakiewiczFrom the Department of Neurology (M.K.-K., K.C.) and Neurodegenerative Diseases Research Group (M.K.-K.), Medical University of Warsaw, Poland; Institute of Pharmacology and Clinical Neuroscience (P.M.A.), Umeå University, Sweden; and Department of Neurology (C.V., O.H., M.L., I.U., A.C.L., D.L.), University of Ulm, Germany.
Peter M AndersenFrom the Department of Neurology (M.K.-K., K.C.) and Neurodegenerative Diseases Research Group (M.K.-K.), Medical University of Warsaw, Poland; Institute of Pharmacology and Clinical Neuroscience (P.M.A.), Umeå University, Sweden; and Department of Neurology (C.V., O.H., M.L., I.U., A.C.L., D.L.), University of Ulm, Germany.
Katarzyna CiecwierskaFrom the Department of Neurology (M.K.-K., K.C.) and Neurodegenerative Diseases Research Group (M.K.-K.), Medical University of Warsaw, Poland; Institute of Pharmacology and Clinical Neuroscience (P.M.A.), Umeå University, Sweden; and Department of Neurology (C.V., O.H., M.L., I.U., A.C.L., D.L.), University of Ulm, Germany.
Cynthia VázquezFrom the Department of Neurology (M.K.-K., K.C.) and Neurodegenerative Diseases Research Group (M.K.-K.), Medical University of Warsaw, Poland; Institute of Pharmacology and Clinical Neuroscience (P.M.A.), Umeå University, Sweden; and Department of Neurology (C.V., O.H., M.L., I.U., A.C.L., D.L.), University of Ulm, Germany.
Olga HelczykFrom the Department of Neurology (M.K.-K., K.C.) and Neurodegenerative Diseases Research Group (M.K.-K.), Medical University of Warsaw, Poland; Institute of Pharmacology and Clinical Neuroscience (P.M.A.), Umeå University, Sweden; and Department of Neurology (C.V., O.H., M.L., I.U., A.C.L., D.L.), University of Ulm, Germany.
Markus LooseFrom the Department of Neurology (M.K.-K., K.C.) and Neurodegenerative Diseases Research Group (M.K.-K.), Medical University of Warsaw, Poland; Institute of Pharmacology and Clinical Neuroscience (P.M.A.), Umeå University, Sweden; and Department of Neurology (C.V., O.H., M.L., I.U., A.C.L., D.L.), University of Ulm, Germany.
Ingo UttnerFrom the Department of Neurology (M.K.-K., K.C.) and Neurodegenerative Diseases Research Group (M.K.-K.), Medical University of Warsaw, Poland; Institute of Pharmacology and Clinical Neuroscience (P.M.A.), Umeå University, Sweden; and Department of Neurology (C.V., O.H., M.L., I.U., A.C.L., D.L.), University of Ulm, Germany.
Albert C LudolphFrom the Department of Neurology (M.K.-K., K.C.) and Neurodegenerative Diseases Research Group (M.K.-K.), Medical University of Warsaw, Poland; Institute of Pharmacology and Clinical Neuroscience (P.M.A.), Umeå University, Sweden; and Department of Neurology (C.V., O.H., M.L., I.U., A.C.L., D.L.), University of Ulm, Germany.
Dorothée LuléFrom the Department of Neurology (M.K.-K., K.C.) and Neurodegenerative Diseases Research Group (M.K.-K.), Medical University of Warsaw, Poland; Institute of Pharmacology and Clinical Neuroscience (P.M.A.), Umeå University, Sweden; and Department of Neurology (C.V., O.H., M.L., I.U., A.C.L., D.L.), University of Ulm, Germany. dorothee.lule@uni-ulm.de.
Medical University of Warsaw · PL

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectiveThis is an observational study on well-being and end-of-life preferences in patients with amyotrophic lateral sclerosis (ALS) in the locked-in state (LIS) in a Polish sample within the EU Joint Programme-Neurodegenerative Disease Research study NEEDSinALS (NEEDSinALS.com).

methodsIn this cross-sectional study, patients with ALS in LIS (n = 19) were interviewed on well-being (quality of life, depression) as a measure of psychosocial adaptation, coping mechanisms, and preferences towards life-sustaining treatments (ventilation, percutaneous endoscopic gastroscopy) and hastened death. Also, clinical data were recorded (ALS Functional Rating Scale-revised version). Standardized questionnaires (Anamnestic Comparative Self-Assessment [ACSA], Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), ALS Depression Inventory-12 items [ADI-12], schedule of attitudes toward hastened death [SAHD], Motor Neuron Disease Coping Scale) were used, which were digitally transcribed; answers were provided via eye-tracking control. In addition, caregivers were asked to judge patients' well-being.

resultsThe majority of patients had an ACSA score >0 and a SEIQoL score >50% (indicating positive quality of life) and ADI-12 <29 (indicating no clinically relevant depression). Physical function did not reflect subjective well-being; even more, those with no residual physical function had a positive well-being. All patients would again choose the life-sustaining techniques they currently used and their wish for hastened death was low (SAHD <10). Caregivers significantly underestimated patient's well-being.

interpretationSome patients with ALS in LIS maintain a high sense of well-being despite severe physical restrictions. They are content with their life-sustaining treatments and have a strong will to live, which both may be underestimated by their families and public opinion.

Indexed as

Amyotrophic Lateral SclerosisNeurodegenerative DiseasesCross-Sectional StudiesHumansQuality of LifeSurveys and Questionnaires

Identifiers

PMID31391247
PMCPMC6745736
OpenAlexW2965314378

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.