In a new retrospective cohort study, researchers at Children’s Hospital of Philadelphia (CHOP) discuss disparities in race and ethnicity when enrolling families to participate in research conducted in its Pediatric Intensive Care Unit (PICU). The findings were published May 15 in an article in the Journal of the American Medical Association (JAMA) Network Open entitled “Racial and Ethnic Disparity in Approach for Pediatric Intensive Care Unit Research Participation.”
Data on consent rate of families participating in research in the PICU remains limited. Prior studies have provided conflicting results on whether there are disparities in rates of enrollment into pediatric research, partly because rates of enrolled subjects are compared with their prevalence in the general US pediatric population.
“We need the right kind of study design to answer this question accurately,” said Nadir Yehya, MD, MSCE, a co-author of the study and an attending physician in the Pediatric Sepsis Program and the Division of Critical Care Medicine at Children's Hospital of Philadelphia.
Researchers reviewed detailed eligibility records of more than 3,100 children from CHOP’s PICU between 2011 and 2021 to see if there were disparities in rates of enrollment among kids who were eligible for these studies. They found that children in the PICU were less likely to be enrolled in studies based on factors such as race and ethnicity, language, religion, and social deprivation. Importantly, a large portion of this was due to eligible subjects not being approached for various reasons. However, even among those approached, Black children remained less likely to be enrolled.
As an example, authors noted that non-English speakers’ lower likelihood of consenting to participate in research in the PICU was in part since researchers were also less likely to approach them due to perceived language barriers. The authors suggest that improving how families are approached and providing research materials in multiple languages could help enhance equitable participation in PICU research.
CHOP now offers a daily interpreter in the PICU to bolster communication with families. The hospital system also plans to add additional resources to help translate lengthy research consent forms into other languages. The authors also suggest that other forms of consent, such as via telephone, could be more broadly adopted to allow families to choose whether to participate in research on their terms, rather than on the schedule of the research team.
“At CHOP we focus on issues that we hope will impact clinical outcomes, and the opportunity to benefit from and contribute to research is one of them,” said Yehya. “Taking a deep dive into our research approach in the PICU empowers us to enhance communication and trust between research teams and families, which simultaneously elevates potential new strategies for research engagement. Our goal is always to change the trajectory of children’s lives and maximize their ability to flourish.”
The CHOP Institutional review board reviewed the study, which was reported in accordance with the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines.
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In a new retrospective cohort study, researchers at Children’s Hospital of Philadelphia (CHOP) discuss disparities in race and ethnicity when enrolling families to participate in research conducted in its Pediatric Intensive Care Unit (PICU). The findings were published May 15 in an article in the Journal of the American Medical Association (JAMA) Network Open entitled “Racial and Ethnic Disparity in Approach for Pediatric Intensive Care Unit Research Participation.”
Data on consent rate of families participating in research in the PICU remains limited. Prior studies have provided conflicting results on whether there are disparities in rates of enrollment into pediatric research, partly because rates of enrolled subjects are compared with their prevalence in the general US pediatric population.
“We need the right kind of study design to answer this question accurately,” said Nadir Yehya, MD, MSCE, a co-author of the study and an attending physician in the Pediatric Sepsis Program and the Division of Critical Care Medicine at Children's Hospital of Philadelphia.
Researchers reviewed detailed eligibility records of more than 3,100 children from CHOP’s PICU between 2011 and 2021 to see if there were disparities in rates of enrollment among kids who were eligible for these studies. They found that children in the PICU were less likely to be enrolled in studies based on factors such as race and ethnicity, language, religion, and social deprivation. Importantly, a large portion of this was due to eligible subjects not being approached for various reasons. However, even among those approached, Black children remained less likely to be enrolled.
As an example, authors noted that non-English speakers’ lower likelihood of consenting to participate in research in the PICU was in part since researchers were also less likely to approach them due to perceived language barriers. The authors suggest that improving how families are approached and providing research materials in multiple languages could help enhance equitable participation in PICU research.
CHOP now offers a daily interpreter in the PICU to bolster communication with families. The hospital system also plans to add additional resources to help translate lengthy research consent forms into other languages. The authors also suggest that other forms of consent, such as via telephone, could be more broadly adopted to allow families to choose whether to participate in research on their terms, rather than on the schedule of the research team.
“At CHOP we focus on issues that we hope will impact clinical outcomes, and the opportunity to benefit from and contribute to research is one of them,” said Yehya. “Taking a deep dive into our research approach in the PICU empowers us to enhance communication and trust between research teams and families, which simultaneously elevates potential new strategies for research engagement. Our goal is always to change the trajectory of children’s lives and maximize their ability to flourish.”
The CHOP Institutional review board reviewed the study, which was reported in accordance with the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines.
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