Evidence map›Paper›PMID 38872033›Full record

ReviewNeurocritical care2024

Equity in Clinical Care and Research Involving Persons with Disorders of Consciousness.

Michael A Rubin, Ariane Lewis, Claire J Creutzfeldt, Gentle S Shrestha, Quinn Boyle, Judy Illes, Ralf J Jox, Stephen Trevick, Michael J Young, Curing Coma Campaign and its contributing members

Abstract readReview
PubMed Publisher
In one paragraph

Review in Neurocritical care, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.

0numbers the graph read from it
0cells of the map it votes in
7citing papers in PubMed
–field-weighted citation impact
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

7 citing papers in PubMed.

  1. Article
  2. Article
  3. Review
  4. Article
  5. Article
  6. Article
  7. 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

10 authors.

Michael A RubinUniversity of Texas Southwestern Medical School, Dallas, TX, USA.
Ariane LewisNYU Langone Medical Center, New York, NY, USA.
Claire J CreutzfeldtHarborview Medical Center, Seattle, WA, USA.
Gentle S ShresthaDepartment of Critical Care Medicine, Tribhuvan University Teaching Hospital, Maharajgunj, Kathmandu, Nepal.
Quinn BoyleNeuroethics Canada, Division of Neurology, Department of Medicine, University of British Columbia, Vancouver, BC, Canada.
Judy IllesNeuroethics Canada, Division of Neurology, Department of Medicine, University of British Columbia, Vancouver, BC, Canada.
Ralf J JoxLausanne University Hospital and University of Lausanne, Lausanne, Switzerland.ORCID 0000-0002-3040-4714
Stephen TrevickNorthwest Neurology, Chicago, IL, USA.
Michael J YoungMassachusetts General Hospital, Harvard Medical School, Boston, MA, USA. Michael.Young@mgh.harvard.edu.ORCID 0000-0001-6661-0811
Curing Coma Campaign and its contributing members

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

People with disorders of consciousness (DoC) are characteristically unable to synchronously participate in decision-making about clinical care or research. The inability to self-advocate exacerbates preexisting socioeconomic and geographic disparities, which include the wide variability observed across individuals, hospitals, and countries in access to acute care, expertise, and sophisticated diagnostic, prognostic, and therapeutic interventions. Concerns about equity for people with DoC are particularly notable when they lack a surrogate decision-maker (legally referred to as "unrepresented" or "unbefriended"). Decisions about both short-term and long-term life-sustaining treatment typically rely on neuroprognostication and individual patient preferences that carry additional ethical considerations for people with DoC, as even individuals with well thought out advance directives cannot anticipate every possible situation to guide such decisions. Further challenges exist with the inclusion of people with DoC in research because consent must be completed (in most circumstances) through a surrogate, which excludes those who are unrepresented and may discourage investigators from exploring questions related to this population. In this article, the Curing Coma Campaign Ethics Working Group reviews equity considerations in clinical care and research involving persons with DoC in the following domains: (1) access to acute care and expertise, (2) access to diagnostics and therapeutics, (3) neuroprognostication, (4) medical decision-making for unrepresented people, (5) end-of-life decision-making, (6) access to postacute rehabilitative care, (7) access to research, (8) inclusion of unrepresented people in research, and (9) remuneration and reciprocity for research participation. The goal of this discussion is to advance equitable, harmonized, guideline-directed, and goal-concordant care for people with DoC of all backgrounds worldwide, prioritizing the ethical standards of respect for autonomy, beneficence, and justice. Although the focus of this evaluation is on people with DoC, much of the discussion can be extrapolated to other critically ill persons worldwide.

Indexed as

Consciousness DisordersBiomedical ResearchCritical CareDecision MakingHealthcare DisparitiesHealth EquityHumansComaDisorders of consciousnessDisparitiesEquityEthicsResearch

Identifiers

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.