Evidence map›Paper›PMID 29728768›Full record

ArticleJournal of neurology2018

Therapeutic decisions in ALS patients: cross-cultural differences and clinical implications.

Peter M Andersen, Magdalena Kuzma-Kozakiewicz, Jürgen Keller, Helena E A Aho-Oezhan, Katarzyna Ciecwierska, Natalia Szejko, Cynthia Vázquez, Sarah Böhm, Gisela Badura-Lotter, Thomas Meyer and 11 more

Abstract read
PubMed Publisher
In one paragraph

Article in Journal of neurology, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 27 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
27citing papers in PubMed, 1 pooled it
6.3field-weighted citation impact, top 3% 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

27 citing papers in PubMed, 1 synthesis or guideline pooled it, 58 citations in OpenAlex.

  1. Emotional, Ethical and Cultural Challenges in Percutaneous Endoscopic Gastrostomy (PEG) Decision-Making: A Systematic Review and Meta-Synthesis.Health expectations : an international journal of public participation in health care and health policy · 2026
    Pooled it
  2. Article
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  5. Review
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  7. Enteral tube feeding for amyotrophic lateral sclerosis/motor neuron disease.The Cochrane database of systematic reviews · 2023
    Review
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  9. 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
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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

21 authors at 6 institutions in 3 countries.

Peter M AndersenInstitute of Pharmacology and Clinical Neuroscience, Umeå University, Umeå, Sweden.
Magdalena Kuzma-KozakiewiczDepartment of Neurology, Medical University of Warsaw, Warsaw, Poland.
Jürgen KellerDepartment of Neurology, University of Ulm, Ulm, Germany.
Helena E A Aho-OezhanDepartment of Neurology, University of Ulm, Ulm, Germany.
Katarzyna CiecwierskaDepartment of Neurology, Medical University of Warsaw, Warsaw, Poland.
Natalia SzejkoDepartment of Neurology, Medical University of Warsaw, Warsaw, Poland.
Cynthia VázquezDepartment of Neurology, University of Ulm, Ulm, Germany.
Sarah BöhmDepartment of Neurology, University of Ulm, Ulm, Germany.
Gisela Badura-LotterDepartment of History and Ethics of Medicine, University of Ulm, Ulm, Germany.
Thomas MeyerDepartment of Neurology, Charité CVK, Berlin, Germany.
Susanne PetriDepartment of Neurology, Hannover Medical School, Hannover, Germany.
Katharina LinseDepartment of Neurology, Technische Universität Dresden, Germany and German Center for Neurodegenerative Diseases (DZNE), Dresden, Germany.
Andreas HermannDepartment of Neurology, Technische Universität Dresden, Germany and German Center for Neurodegenerative Diseases (DZNE), Dresden, Germany.
Olof SembDepartment of Clinical Science, Umeå University, Umeå, Sweden.
Erica StenbergInstitute of Pharmacology and Clinical Neuroscience, Umeå University, Umeå, Sweden.
Simona NackbergDepartment of Clinical Science, Umeå University, Umeå, Sweden.
Johannes DorstDepartment of Neurology, University of Ulm, Ulm, Germany.
Ingo UttnerDepartment of Neurology, University of Ulm, Ulm, Germany.
Ann-Cristin HäggströmInstitute of Pharmacology and Clinical Neuroscience, Umeå University, Umeå, Sweden.
Albert C LudolphDepartment of Neurology, University of Ulm, Ulm, Germany. albert.ludolph@rku.de.
Dorothée LuléDepartment of Neurology, University of Ulm, Ulm, Germany.ORCID http://orcid.org/0000-0001-5944-398X
Universität Ulm · DEUmeå University · SEMedical University of Warsaw · PLGerman Center for Neurodegenerative Diseases · DECharité - Universitätsmedizin Berlin · DEMedizinische Hochschule Hannover · DE

Funding

Bundesministerium für Bildung und Forschung 01GM1103ADeutsche Forschungsgemeinschaft LU 336/13-2 BI 195/54-2Joint Programme for Neurodegenerative Diseases 01ED1405
6 · The paper itself

Abstract

objectiveQuantitative analysis of decision-making on therapeutic options in different sociocultural context in amyotrophic lateral sclerosis (ALS).

methodsALS patients (n = 244) were consecutively recruited in Germany (n = 83), Poland (n = 83), and Sweden (n = 78) in a prospective cross-cultural study ( www.NEEDSinALS.com ). They were interviewed on preferences for therapeutic techniques including invasive (IV) and non-invasive ventilation (NIV), as well as percutaneous endoscopic gastrostomy (PEG) and on hypothetical termination of these using quantitative questions. Using standardized questionnaires, religiousness, personal values, quality of life, and depressiveness were assessed.

resultsNIV was most frequently used in Germany and PEG in Sweden. Swedish patients were most liberal on initiation and termination of PEG, NIV and IV. Polish patients were mostly undecided and were least likely to consider discontinuing supportive management. Current use was partly associated with age, gender and state of physical function; also, financial support explained some variance. Future preferences on therapeutic options from the patient's perspective were also closely associated with cultural factors. The more oriented towards traditional and conservative values, the less likely patients were to decide for invasive therapeutic devices (IV, PEG), the least likely to have ideations to discontinue any device and the more likely to have an undecided attitude.

conclusionsCurrent use of therapeutic options is determined by medical condition in analogy to clinical guidelines. For future considerations, other factors such as cultural background are crucial, yielding hurdles to be regarded in the implementation of advanced directives in a multicultural environment.

Indexed as

Cross-Cultural ComparisonAdultAgedAmyotrophic Lateral SclerosisAnalysis of VarianceDecision MakingDepressionEuropeFemaleGastrostomyHumansMaleMiddle AgedNoninvasive VentilationQuality of LifeRetrospective StudiesAmyotrophic lateral sclerosisCultureDecisionMedical carePalliative careQuality of life

Identifiers

PMID29728768
OpenAlexW2800488414

What OpenQuestion holds

Textmetadata
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.