Clinical Futures Blog

Health Equity for Children with Medical Complexity
Promoting Health Equity through Caregiver Support for Children with Medical Complexity
May 24, 2023

Caring for a medically complex child in the United States often requires navigating complex, inefficient systems to access health insurance, medical care, and other support services like specialized therapies and equipment. For children with complex special health care needs, caregivers often spend hours each week arranging and coordinating their care, which may limit their ability to maintain stable employment and support their children’s health and well-being. These care coordination burdens may be particularly impactful for low-income caregivers and caregivers from minoritized racial and ethnic groups and may therefore contribute to inequities in child health outcomes.  

Our Study Design and Findings

In a recent study published in Academic Pediatrics, we investigated inequities in care coordination burden among caregivers of medically complex children using data from the 2018-2020 National Survey of Children’s Health. We specifically examined race, ethnicity, income, and insurance-based differences in time spent coordinating care, as well as the association between time spent coordinating care and forgone medical care. We found that more than 40% of caregivers of medically complex children spent time coordinating their child’s care each week, and that children whose caregivers reported spending >5 hours per week coordinating their care were disproportionately Hispanic, low-income, and publicly insured or uninsured. In addition, increased time spent coordinating care was associated with a greater probability of children forgoing needed medical care. 

We believe these findings have important implications for health systems, pediatric payers, and federal and state policymakers.
For health system leaders, we recommend providing additional care coordination supports to low-income, publicly insured, and minoritized caregivers of medically complex children. This could include:

  • streamlining appointment scheduling across subspecialties.
  • offering interpretation services during appointment scheduling.
  • increasing access to telehealth subspecialty or primary care
  • Implementing programs designed to support low-income caregivers of medically complex children 

For pediatric payers (particularly Medicaid), our findings underscore the importance of equity-focused interventions that:

For federal and state policymakers, our findings highlight the importance of policies that support caregivers of medically complex children, including: 

  • guaranteed paid family medical leave
  • innovative care models that could improve care coordination supports for these children. 

The Integrated Care for Kids Model and the Advancing Care for Exceptional Kids Act both aim to support cross-sector collaborations and care navigation to improve health outcomes for children with complex medical and social needs. If these and other similar models of care are designed and implemented with a specific focus on health equity, they could help reduce inequities in care coordination burdens and promote more equitable health outcomes for children with medical complexity. 

Improving Outcomes for Medically Complex Children

Improving health outcomes and promoting health equity for children with special health care needs may ultimately require multi-layered interventions designed to reduce care coordination burdens for low-income, minoritized, and publicly insured caregivers. Health systems and payers who invest in these interventions could see downstream financial benefits, as caregivers with fewer care coordination burdens may be able to re-focus their time and resources on supporting their children’s health and development, including attending needed visits.

Aditi Vasan, MD, MSHP is a faculty member at Clinical Futures and PolicyLab, and an instructor in the Division of General Pediatrics at Children’s Hospital of Philadelphia (CHOP) and the Perelman School of Medicine at the University of Pennsylvania. Dr. Vasan is passionate about health equity, and her research is centered on improving health outcomes for children and families living in poverty. Her current work is focused on understanding and addressing the impact of social determinants of health on child health outcomes, implementing and evaluating social needs screening and referral programs, alleviating families' barriers to government benefit program participation, and exploring the relationship between childhood food insecurity, government nutrition benefit program participation, and children's health care utilization and expenditures.
Dr. Vasan received her BA in Molecular Biology and Global Health and Health Policy at Princeton University, and her MD at Johns Hopkins University School of Medicine. She also received a Master in Health Policy Research (MSHP) at the University of Pennsylvania, as a fellow in the National Clinician Scholars Program. She completed her residency training in Pediatrics at CHOP, where she also served as chief resident.
Chén C. Kenyon, MD, MSHP is a core faculty member at Clinical Futures and PolicyLab at The Children’s Hospital of Philadelphia (CHOP), Assistant Professor of Pediatrics at the University of Pennsylvania Perelman School of Medicine and a general pediatrics hospitalist attending at CHOP.
Dr. Kenyon's research focuses on integrating care systems and reducing outcome disparities for children with asthma. His recent work focuses on developing novel interventions to enhance asthma controller medication use in the highest risk children by leveraging mobile health technology and incentives oriented to the child. He also co-leads the Asthma Population Health Workgroup at CHOP, implementing and evaluating network-wide interventions for children and families with different levels of asthma severity and risk. 
Dr. Kenyon received his undergraduate degree in Mathematics from the University of Rochester and attended medical school at Boston University School of Medicine. He completed his residency training in the Boston Combined Residency Program in Pediatrics at Boston Children’s Hospital and Boston Medical Center, where he served as chief resident. He received his Masters in Health Policy Research (MSHP) as a Robert Wood Johnson Clinical Scholar at the University of Pennsylvania in 2013.
Alexander G. Fiks, MD, MSCE is a primary care pediatrician, a Professor of Pediatrics, and holds a Distinguished Endowed Chair in the Department of Pediatrics at the Perelman School of Medicine at the University of Pennsylvania and Children’s Hospital of Philadelphia. Board certified in clinical informatics, Dr. Fiks’ research is aimed at improving outcomes for ambulatory pediatric patients through primary care practice-based research with a focus on improving health and healthcare decision-making through health information technology.
To achieve these goals, much of Dr. Fiks’ research has focused on fostering shared decision making between clinicians and families, often in the setting of behavioral health conditions. He is also especially interested in how electronic health record data may best be used to improve primary care, medication use and child health more broadly. With the American Academy of Pediatrics Pediatric Research in Office Settings Network, which he directs, Dr. Fiks has overseen the creation of the Collaborative Electronic Reporting for Comparative Effectiveness Research (CER2), an electronic health record database designed to support pharmacoepidemiologic and other comparative effectiveness studies that currently include >2 million US children from across multiple health systems. 
Dr. Fiks is also the medical director for the Pediatric Research Consortium (PeRC), CHOP's practice-based research network, director of Clinical Futures, a CHOP Research Institute Center of Emphasis, a founding member of the hospital’s Department of Biomedical and Health Informatics, and faculty in PolicyLab. He also directs the Possibilities Project, a CHOP-based effort focused on primary care practice innovation and transformation.

Study authors from Children’s Hospital of Philadelphia include Aditi Vasan, MD, MSHP, Chén C. Kenyon, MD, MSHP, and Alexander G. Fiks, MD, MSCE

Vasan A, Kyle MA, Venkataramani AS, Kenyon CC, Fiks AG. Inequities in Time Spent Coordinating Care for Children and Youth With Special Health Care Needs. Acad Pediatr. 2023 Mar 12:S1876-2859(23)00090-6. doi: 10.1016/j.acap.2023.03.002. Epub ahead of print. PMID: 36918094.

Funding for this study was provided by grant F32 HS028555.


Subscribe to: Promoting Health Equity through Caregiver Support for Children with Medical Complexity