Family-Centered Care Among Children with Sickle Cell Disease: An Analysis of the National Survey of Children’s Health

Authors

  • Blakelee Eggleston
  • Covenant Elenwo
  • Molly Bloom
  • Shawna Duncan
  • Micah Hartwell

Abstract

Background 

Sickle Cell Disease (SCD) involves several red blood cell disorders affecting nearly 2,000 newborns each year and approximately 100,000 individuals in the United States. SCD requires life-long medical care for their 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 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 contemporaneous studies.

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Published

2024-12-12

Issue

Vol. 8 No. 3 (2024): Article

Section

Medical

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