Evidence map›Paper›PMID 37704937›Full record

ArticleNeurocritical care2023

Common Data Elements for Disorders of Consciousness: Recommendations from the Working Group on Goals-of-Care and Family/Surrogate Decision-Maker Data.

Matthew N Jaffa, Hannah L Kirsch, Claire J Creutzfeldt, Mary Guanci, David Y Hwang, Darlene LeTavec, Dea Mahanes, Girija Natarajan, Alexis Steinberg, Darin B Zahuranec and 2 more

Erratum issuedAbstract read
PubMed Publisher
In one paragraph

Article in Neurocritical care, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 6 papers.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed
3.2field-weighted citation impact, top 8% 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, 11 citations in OpenAlex.

  1. Review
  2. Article
  3. Review
  4. Article
  5. Article
  6. Article
4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

12 authors at 11 institutions in 1 country.

Matthew N JaffaDepartment of Neurology, Ayer Neuroscience Institute, Hartford Hospital, Hartford, CT, USA.
Hannah L KirschDepartment of Neurology, Stanford University School of Medicine, 453 Quarry Road, MC 5235, Palo Alto, CA, USA. hkirsch@stanford.edu.
Claire J CreutzfeldtDepartment of Neurology, Division of Stroke and Palliative Care, University of Washington, Seattle, WA, USA.
Mary GuanciDepartment of Neuroscience Nursing, Massachusetts General Hospital, Boston, MA, USA.
David Y HwangDivision of Neurocritical Care, Department of Neurology, University of North Carolina School of Medicine, Chapel Hill, NC, USA.
Darlene LeTavec, Windham, New Hampshire, USA.
Dea MahanesDepartments of Neurology and Neurosurgery, UVA Health, Charlottesville, VA, USA.
Girija NatarajanDepartment of Pediatrics, Children's Hospital of Michigan, Detroit Medical Center, Detroit, MI, USA.
Alexis SteinbergDepartment of Neurology, Critical Care Medicine, and Emergency Medicine, University of Pittsburgh, Pittsburgh, PA, USA.
Darin B ZahuranecDepartment of Neurology, University of Michigan School of Medicine, Ann Arbor, MI, USA.
Susanne MuehlschlegelDepartments of Neurology, Anesthesiology/Critical Care and Surgery, University of Massachusetts Chan Medical School, Worcester, MA, USA.
Curing Coma Campaign Collaborators
Michigan Medicine · USUniversity of North Carolina at Chapel Hill · USHartford Hospital · USDetroit Medical Center · USStanford University · USUniversity of Massachusetts Chan Medical School · USUniversity of Pittsburgh · USMassachusetts General Hospital · USUniversity of Virginia Health System · USUniversity of Washington · USRonald McDonald House Charities of Eastern New England · US

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundTo facilitate comparative research, it is essential for the fields of neurocritical care and rehabilitation to establish common data elements (CDEs) for disorders of consciousness (DoC). Our objective was to identify CDEs related to goals-of-care decisions and family/surrogate decision-making for patients with DoC.

methodsTo achieve this, we formed nine CDE working groups as part of the Neurocritical Care Society's Curing Coma Campaign. Our working group focused on goals-of-care decisions and family/surrogate decision-makers created five subgroups: (1) clinical variables of surrogates, (2) psychological distress of surrogates, (3) decision-making quality, (4) quality of communication, and (5) quality of end-of-life care. Each subgroup searched for existing relevant CDEs in the National Institutes of Health/CDE catalog and conducted an extensive literature search for additional relevant study instruments to be recommended. We classified each CDE according to the standard definitions of "core", "basic", "exploratory", or "supplemental", as well as their use for studying the acute or chronic phase of DoC, or both.

resultsWe identified 32 relevant preexisting National Institutes of Health CDEs across all subgroups. A total of 34 new instruments were added across all subgroups. Only one CDE was recommended as disease core, the "mode of death" of the patient from the clinical variables subgroup.

conclusionsOur findings provide valuable CDEs specific to goals-of-care decisions and family/surrogate decision-making for patients with DoC that can be used to standardize studies to generate high-quality and reproducible research in this area.

Indexed as

Biomedical ResearchCommon Data ElementsConsciousness DisordersDecision MakingGoalsHumansComaCommon data elementsConsciousnessGoals of careShared decision-makingSurrogate decision-maker

Identifiers

PMID37704937
OpenAlexW4386698392

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.