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Family centered care among children with sickle cell disease: An analysis of the National Survey of Children’s Health

Eggleston, Blakelee
Elenwo, Covenant
Bloom, Molly
Duncan, Shawna
Hartwell, Micah
Background: Sickle Cell Disease (SCD) involves several red blood cell disorders affecting nearly 2,000 new babies annually and approximately 100,000 individuals in the United States. SCD requires life-long medical care and symptoms often include recurrent pain crises and early mortality. Therefore, our primary objective is to assess ratings of patient family-centered care (PFCC) among children with SCD compared to children without the disease using the National Survey of Children’s Health (NSCH).
Methods: We extracted data from the 2020-2021 cycles of the survey to identify children with and without SCD and questions from modules related to PFCC. We reported the cumulative average of PFCC questions (scored between 0-4 with higher scoring equating to better PFCC) among groups and compared rates using regression analysis.
Results: We identified a sample of children (n = 53, N = 93,669) based on SCD and PFCC using the National Survey of Children’s Health (NSCH) dataset. The cumulative average of PFCC for the SCD was 3.69 (SE = 0.25) and 3.59 (SE = 0.58) for those without SCD -lacking observable statistical significance in binary and adjusted regression models (Coef: 0.10; CI: -0.09-0.30 and Coef: 0.17; CI: -0.06-0.40, respectively).
Conclusion: Given there was no significant difference in cumulative PFCC scores between children with and without SCD, patient care for children with SCD is on par with the satisfaction with other children regardless of their increased care needs. However, improvements are still needed to help children with SCD receive more PFCC-focused care given other contemporary studies.