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Updated: Jun 27, 2025

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Patterns of primary and specialty care among children with sickle cell anemia
Pooja N Patel1, Kevin J Dombkowski1, Brian Madden1
1Susan B Meister Child Health Evaluation and Research Center, Department of Pediatrics, University of Michigan, Ann Arbor, Michigan, USA.
Insights
Many children with sickle cell anemia (SCA) receive regular primary care but have gaps in essential hematology care. Strategies are needed to improve access to specialized services for pediatric SCA patients.
Area of Science:
- Pediatric Hematology
- Public Health
- Healthcare Access
Background:
- National guidelines advocate for regular primary care provider (PCP) and hematologist visits for children with sickle cell anemia (SCA).
- Comprehensive, multidisciplinary care is crucial for managing pediatric SCA.
- Understanding current care patterns is essential for improving health outcomes.
Purpose of the Study:
- To characterize primary and hematology care utilization among children with SCA in Michigan.
- To identify patterns in outpatient visits to PCPs and hematologists.
- To assess adherence to recommended care standards.
Main Methods:
- Analysis of Michigan Medicaid administrative claims data from 2010-2018.
- Identification of children aged 1-17 years with SCA.
- Calculation of visit rates per person-year and annual proportions of children with PCP and/or hematologist visits.
Main Results:
- 875 children with SCA were included, contributing 2889 person-years of data.
- Annually, 87%-93% saw a PCP, while 63%-85% saw a hematologist.
- Only 66% of person-years included visits with both a PCP and a hematologist annually, indicating care gaps.
Conclusions:
- Significant disparities exist in the consistent receipt of annual hematology care for children with SCA.
- Leveraging the high rate of annual PCP visits could be a strategy to enhance SCA-specific service delivery.
- Improving integrated care is vital for optimizing health for pediatric SCA patients.
Background And Objective:
National guidelines recommend that children with sickle cell anemia (SCA) be seen regularly by primary care providers (PCPs) as well as hematologists to receive comprehensive, multidisciplinary care. The objective is to characterize the patterns of primary and hematology care for children with SCA in Michigan.
Methods:
Using validated claims definitions, children ages 1-17 years with SCA were identified using Michigan Medicaid administrative claims from 2010 to 2018. We calculated the number of outpatient PCP and hematologist visits per person-year, as well as the proportion of children with at least one visit to a PCP, hematologist, or both a PCP and hematologist annually. Negative binomial regression was used to calculate annual rates of visits for each provider type.
Results:
A total of 875 children contributed 2889 person-years. Of the total 22,570 outpatient visits, 52% were with a PCP and 34% with a hematologist. Annually, 87%-93% of children had a visit with a PCP, and 63%-85% had a visit with a hematologist. Approximately 66% of total person-years had both visit types within a year. The annual rate ranged from 2.3 to 2.5 for hematologist visits and from 3.7 to 4.1 for PCP visits.
Conclusions:
Substantial gaps exist in the receipt of annual hematology care. Given that the majority of children with SCA see a PCP annually, strategies to leverage primary care visits experienced by this population may be needed to increase receipt of SCA-specific services.
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