Abstract
Background
Individuals of minority race/ethnicity have lower rates of participation in genomic research. This study evaluated sociodemographic characteristics associated with decisions to enroll in a pediatric critical care biorepository.
Methods
Parents of children admitted to the PICU between November 2014 and May 2017 were offered to enroll their child in a biorepository using a single-page opt-in consent. Missed enrollment was assessed by failure to complete the form or declining consent on the form. We conducted a retrospective chart review for sociodemographic and clinical information. Bivariate and multivariable regression analyses were performed.
Results
In 4055 encounters, representing 2910 patients with complete data, 1480 (50%) completed the consent form and 1223 (83%) enrolled. We found higher odds of incomplete consent for non-English-speaking parents (OR = 2.1, p < 0.0001) and parents of children of all races except non-Hispanic white (OR = 1.27–1.99, p < 0.0001). We found higher odds of declined consent in patients with Medicaid (OR = 1.67, p = 0.003) and parents of children of all races except non-Hispanic white (OR = 1.32–2.9, p < 0.0001).
Conclusion
Inability to enroll patients in a critical care biorepository may be associated with several sociodemographic factors at various points in recruitment/enrollment.
Impact
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Individuals of minority race/ethnicity are less likely to enroll in genomic research and in critical care research.
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This study evaluated sociodemographic characteristics associated with decisions to enroll a child in a pediatric critical care biorepository.
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Sociodemographic factors including race/ethnicity, primary language, and insurance status and patient clinical characteristics are associated with differential enrollment into a pediatric critical care biorepository.
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More research is needed to understand how study team–participant interactions may play a role in differential enrollment.
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Barriers to enrollment occur both at the time of approaching and consenting for enrollment.
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Data availability
Data can be obtained by contacting the corresponding author.
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Funding
E.P. reports funding support under the NIH NICHD L40 HD089260, K12HD047349, and 1K23HD09828901A1 during the time in which this project was completed. No other author reports funding.
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Contributions
E.P. participated in study conceptualization, design, data collection, analysis, manuscript preparation and revision. A.S. participated in data collection, analysis, critical manuscript review and revision. T.S. participated in study design, data analysis, manuscript preparation and revision. T.P. participated in data collection, analysis, critical manuscript review and revision. S.D. participated in data analysis and critical manuscript review and revision. K.R. participated in study design, data analysis and critical manuscript review and revision. M.M.D. participated in study conceptualization, design, data analysis, critical manuscript review and revision.
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Paquette, E., Shukla, A., Smith, T. et al. Barriers to enrollment in a pediatric critical care biorepository. Pediatr Res 94, 803–810 (2023). https://doi.org/10.1038/s41390-023-02465-w
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DOI: https://doi.org/10.1038/s41390-023-02465-w
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