Racial Disparities in Patient Research Consent Status in Intracerebral Hemorrhage. (16th November 2020)

• Record Type: Journal Article
• Authors: Bushara, Omar; Garcia, Roxanna; Gordon, Elisa; Naidech, Andrew M
• Is Part Of: Neurosurgery. Volume 67(2010)Supplement 1
• Publication Date: 2020-11-16
• Subjects: Nervous system -- Surgery -- Periodicals; 617.48005
• DOI: 10.1093/neuros/nyaa447_241
• Languages: English
• ISSNs: 0148-396X

Abstract

Abstract: INTRODUCTION: Intracerebral hemorrhage (ICH) is the most morbid form of stroke. Racial disparities in ICH prevalence and subsequent patient care magnify disparities in patient clinical outcomes. Representative cohorts are needed to study ICH without racial bias. It has been suggested that African-Americans are less likely to provide informed consent for medical research. However, disparities in patient research informed consent status are not well studied. These disparities may bias available data, resulting in biased conclusions. METHODS: We constructed a prospective, observational registry of patients who presented with ICH between 2006–2020. We attempted to obtain informed consent for participation in the registry during the hospital stay. When patients were unable to provide consent (e.g., depressed consciousness), consent was sought from a legally authorized representative (LAR). An IRB waiver of consent enabled recruitment of patients who could not consent due to reduced consciousness and decedents. Categorical data were compared by race using chi-squared tests. RESULTS: The cohort included 727 patients, of whom 406 were white (56%) and 321 were non-white (44%). Consent status was associated with race. White patients had higher consent rates from a LAR compared to non-white patients (37% versus 28%, overall P = . 008). Non-white patients had higher rates of being unable to give consent and having no LAR available (13% versus 21%). Race was not associated with severity of neurological injury as measured by the ICH Score ( P = . 4) nor GCS ( P = . 3). CONCLUSION: Informed consent status for a research registry varied with patient race. White patients were more likely to have consent from a LAR compared to non-white patients. Registries that require a person to give consent may be less likely to include non-white patients because there may be no LAR available, which could bias the resulting data. Research registries should remove barriers to participation to minimize the likelihood of research selection bias.