학술논문
Common Data Elements for Disorders of Consciousness: Recommendations from the Working Group on Goals-of-Care and Family/Surrogate Decision-Maker Data.
Document Type
Academic Journal
Author
Jaffa MN; Department of Neurology, Ayer Neuroscience Institute, Hartford Hospital, Hartford, CT, USA.; Kirsch HL; Department of Neurology, Stanford University School of Medicine, 453 Quarry Road, MC 5235, Palo Alto, CA, USA. hkirsch@stanford.edu.; Creutzfeldt CJ; Department of Neurology, Division of Stroke and Palliative Care, University of Washington, Seattle, WA, USA.; Guanci M; Department of Neuroscience Nursing, Massachusetts General Hospital, Boston, MA, USA.; Hwang DY; Division of Neurocritical Care, Department of Neurology, University of North Carolina School of Medicine, Chapel Hill, NC, USA.; LeTavec D; Windham, New Hampshire, USA.; Mahanes D; Departments of Neurology and Neurosurgery, UVA Health, Charlottesville, VA, USA.; Natarajan G; Department of Pediatrics, Children's Hospital of Michigan, Detroit Medical Center, Detroit, MI, USA.; Steinberg A; Department of Neurology, Critical Care Medicine, and Emergency Medicine, University of Pittsburgh, Pittsburgh, PA, USA.; Zahuranec DB; Department of Neurology, University of Michigan School of Medicine, Ann Arbor, MI, USA.; Muehlschlegel S; Departments of Neurology, Anesthesiology/Critical Care and Surgery, University of Massachusetts Chan Medical School, Worcester, MA, USA.
Source
Publisher: Humana Press Country of Publication: United States NLM ID: 101156086 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1556-0961 (Electronic) Linking ISSN: 15416933 NLM ISO Abbreviation: Neurocrit Care Subsets: MEDLINE
Subject
Language
English
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.
(© 2023. Springer Science+Business Media, LLC, part of Springer Nature and Neurocritical Care Society.)
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.
(© 2023. Springer Science+Business Media, LLC, part of Springer Nature and Neurocritical Care Society.)