Abstract
Objectives
In the United States, caregivers of children and youth with special healthcare needs
(CYSHCN) must navigate complex, inefficient health care and insurance systems to access
medical care. We assessed for sociodemographic inequities in time spent coordinating
care for CYSHCN and examined the association between time spent coordinating care
and forgone medical care.
Methods
This cross-sectional study used data from the 2018-2020 National Survey of Children’s
Health, which included 102,740 children across all 50 states. We described time spent
coordinating care for children with less complex SHCN (managed through medications)
and more complex SHCN (resulting in functional limitations or requiring specialized
therapies). We examined race-, ethnicity-, income-, and insurance-based differences
in time spent coordinating care among CYSHCN and used multivariable logistic regression
to examine the association between time spent coordinating care and forgone medical
care.
Results
Over 40% of caregivers of children with more complex SHCN reported spending time coordinating
their children’s care each week. CYSHCN whose caregivers spent >5 hours/week on care
coordination were disproportionately Hispanic, low-income, and publicly insured or
uninsured. Increased time spent coordinating care was associated with an increasing
probability of forgone medical care: 6.7% for children whose caregivers who spent
no weekly time coordinating care versus 9.4% for <1 hour; 11.4% for 1-4 hours; and
15.8% for >5 hours.
Conclusion
Reducing time spent coordinating care and providing additional supports to low-income
and minoritized caregivers may be beneficial for pediatric payers, policymakers, and
health systems aiming to promote equitable access to health care for CYSHCN.
Keywords
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Article info
Publication history
Accepted:
March 10,
2023
Received:
November 18,
2022
Publication stage
In Press Journal Pre-ProofIdentification
Copyright
© 2023 Published by Elsevier Inc.
