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- Title
Racial and Ethnic Disparity in Approach for Pediatric Intensive Care Unit Research Participation.
- Authors
Mayer, Sarah L.; Brajcich, Michelle R.; Juste, Lionola; Hsu, Jesse Y.; Yehya, Nadir
- Abstract
Key Points: Question: Are sociodemographic factors associated with rates of approach and consent for pediatric intensive care unit (PICU) research? Findings: This cohort study of 3154 children found disparities in approach and consent according to race and ethnicity, language, religion, and degree of social deprivation. Lower consent rates were partly mediated by lower approach rates, with reduced approach mediating approximately half of the lower rates of consent for Black children. Meaning: In this study, multiple sociodemographic variables were associated with disparate consent rates for PICU research, and strategies to increase approaches could contribute to equitable enrollment in PICU studies. This cohort study assesses all interventional and observational research studies that required prospective informed consent from a large academic pediatric intensive care unit (PICU) over 10 years and analyzes disparities in approach and consent by race and ethnicity, religion, spoken language, and socioeconomic status. Importance: While disparities in consent rates for research have been reported in multiple adult and pediatric settings, limited data informing enrollment in pediatric intensive care unit (PICU) research are available. Acute care settings such as the PICU present unique challenges for study enrollment, given the highly stressful and emotional environment for caregivers and the time-sensitive nature of the studies. Objective: To determine whether race and ethnicity, language, religion, and Social Deprivation Index (SDI) were associated with disparate approach and consent rates in PICU research. Design, Setting, and Participants: This retrospective cohort study was performed at the Children's Hospital of Philadelphia PICU between July 1, 2011, and December 31, 2021. Participants included patients eligible for studies requiring prospective consent. Data were analyzed from February 2 to July 26, 2022. Exposure: Exposures included race and ethnicity (Black, Hispanic, White, and other), language (Arabic, English, Spanish, and other), religion (Christian, Jewish, Muslim, none, and other), and SDI (composite of multiple socioeconomic indicators). Main Outcomes and Measures: Multivariable regressions separately tested associations between the 4 exposures (race and ethnicity, language, religion, and SDI) and 3 outcomes (rates of approach among eligible patients, consent among eligible patients, and consent among those approached). The degree to which reduced rates of approach mediated the association between lower consent in Black children was also assessed. Results: Of 3154 children included in the study (median age, 6 [IQR, 1.9-12.5] years; 1691 [53.6%] male), rates of approach and consent were lower for Black and Hispanic families and those of other races, speakers of Arabic and other languages, Muslim families, and those with worse SDI. Among children approached for research, lower consent odds persisted for those of Black race (unadjusted odds ratio [OR], 0.73 [95% CI, 0.55-0.97]; adjusted OR, 0.68 [95% CI, 0.49-0.93]) relative to White race. Mediation analysis revealed that 51.0% (95% CI, 11.8%-90.2%) of the reduced odds of consent for Black individuals was mediated by lower probability of approach. Conclusions and Relevance: In this cohort study of consent rates for PICU research, multiple sociodemographic factors were associated with lower rates of consent, partly attributable to disparate rates of approach. These findings suggest opportunities for reducing disparities in PICU research participation.
- Subjects
PENNSYLVANIA; ETHNIC groups; LANGUAGE &; languages; STATISTICAL correlation; RESEARCH funding; HUMAN research subjects; MULTIPLE regression analysis; SOCIOECONOMIC factors; LOGISTIC regression analysis; RETROSPECTIVE studies; MULTIVARIATE analysis; DESCRIPTIVE statistics; CHILDREN'S hospitals; FAMILIES; RACE; PEDIATRICS; LONGITUDINAL method; ODDS ratio; INTENSIVE care units; RELIGION; MEDICAL research; INFORMED consent (Medical law); RESEARCH; MEDICAL records; ACQUISITION of data; FACTOR analysis; CONFIDENCE intervals; COMPARATIVE studies; DATA analysis software; PSYCHOSOCIAL factors; SOCIAL isolation; PATIENT participation; CRITICALLY ill patient psychology; CHILDREN
- Publication
JAMA Network Open, 2024, Vol 7, Issue 5, pe2411375
- ISSN
2574-3805
- Publication type
Article
- DOI
10.1001/jamanetworkopen.2024.11375