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

INTRODUCTION: In order to facilitate comparative research, it is essential for the fields of neurocritical care and rehabilitation to establish common data elements (CDE) 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 NIH/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 utility for studying the acute or chronic phase of DoC, or both. RESULTS: We identified 32 relevant pre-existing NIH 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.