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; Susanne Muehlschlegel; Curing Coma Campaign Collaborators

doi:10.1007/s12028-023-01796-0

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

Neurocrit Care. 2023 Dec;39(3):600-610. doi: 10.1007/s12028-023-01796-0. Epub 2023 Sep 13.

Affiliations

¹ Department of Neurology, Ayer Neuroscience Institute, Hartford Hospital, Hartford, CT, USA.
² Department of Neurology, Stanford University School of Medicine, 453 Quarry Road, MC 5235, Palo Alto, CA, USA. hkirsch@stanford.edu.
³ Department of Neurology, Division of Stroke and Palliative Care, University of Washington, Seattle, WA, USA.
⁴ Department of Neuroscience Nursing, Massachusetts General Hospital, Boston, MA, USA.
⁵ Division of Neurocritical Care, Department of Neurology, University of North Carolina School of Medicine, Chapel Hill, NC, USA.
⁶ , Windham, New Hampshire, USA.
⁷ Departments of Neurology and Neurosurgery, UVA Health, Charlottesville, VA, USA.
⁸ Department of Pediatrics, Children's Hospital of Michigan, Detroit Medical Center, Detroit, MI, USA.
⁹ Department of Neurology, Critical Care Medicine, and Emergency Medicine, University of Pittsburgh, Pittsburgh, PA, USA.
¹⁰ Department of Neurology, University of Michigan School of Medicine, Ann Arbor, MI, USA.
¹¹ Departments of Neurology, Anesthesiology/Critical Care and Surgery, University of Massachusetts Chan Medical School, Worcester, MA, USA.

PMID: 37704937
DOI: 10.1007/s12028-023-01796-0

Abstract

Background: To 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.

Methods: To 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.

Results: We 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.

Conclusions: Our 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.

Keywords: Coma; Common data elements; Consciousness; Goals of care; Shared decision-making; Surrogate decision-maker.

MeSH terms

Biomedical Research*
Common Data Elements*
Consciousness Disorders / diagnosis
Consciousness Disorders / therapy
Decision Making
Goals
Humans