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Racial and Ethnic Disparity in Approach for Pediatric Intensive Care Unit Research Participation
Sarah L Mayer1, Michelle R Brajcich1, Lionola Juste1
1Department of Anesthesiology and Critical Care Medicine, Children's Hospital of Philadelphia and University of Pennsylvania, Philadelphia.
Insights
Research participation in pediatric intensive care units (PICUs) was lower for Black and Hispanic families, and those facing language or socioeconomic barriers. Lower approach rates partly explained reduced consent for Black children, highlighting opportunities to reduce disparities.
Area of Science:
- Pediatric intensive care research
- Clinical trial enrollment
- Health equity
Background:
- Disparities in research consent rates are documented in adult and pediatric settings.
- Limited data exists on enrollment challenges within pediatric intensive care units (PICUs).
- PICU environments pose unique difficulties for study enrollment due to high stress and time sensitivity.
Purpose of the Study:
- To investigate associations between sociodemographic factors and research approach/consent rates in PICU settings.
- To determine if race, ethnicity, language, religion, and Social Deprivation Index (SDI) influence PICU study enrollment.
- To assess the extent to which lower approach rates mediate consent disparities.
Main Methods:
- Retrospective cohort study at a single PICU from 2011-2021.
- Included patients eligible for studies requiring prospective consent.
- Multivariable regressions analyzed associations between sociodemographic factors (race, ethnicity, language, religion, SDI) and approach/consent rates.
Main Results:
- Lower approach and consent rates were observed for Black and Hispanic families, non-English speakers, Muslim families, and those with higher SDI.
- Black children had lower consent odds compared to White children (adjusted OR, 0.68).
- Lower approach rates accounted for 51% of the reduced consent odds in Black children.
Conclusions:
- Sociodemographic factors are linked to lower consent rates in PICU research, partly due to disparate approach rates.
- Findings indicate potential strategies for reducing disparities in pediatric critical care research participation.
- Addressing approach disparities is crucial for improving equity in PICU research enrollment.
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.
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