Children with Special Health Care Needs (CSHCN) — i.e., children with active chronic illnesses—have worse long-term health outcomes and require far more healthcare services than other children. As such, they exert a disproportionate impact on health and healthcare in the US.
Chronic illnesses such as asthma and cancer require systems designed to anticipate long-term needs. Children with Medical Complexity (CMC)—a subset of CSHCN with the most complex, severe, and long-lasting illnesses—may especially benefit from intense care coordination and innovations to improve care delivery systems.
Current projects include:
Improving Pediatric Emergency Department Asthma Care: The ePACCI-ED Trial
Funder: ATS Foundation / Breathe California of Los Angeles
Principal Investigator: Sande Okelo, MD, PhD, PI
Asthma is a prevalent chronic pediatric disease. Half of children who have asthma have uncontrolled asthma and frequent asthma attacks, contributing to 700,000 Emergency Department (ED) visits. We are conducting a pilot study among children 2-18 years presenting for asthma exacerbations to the ED at the Children’s Hospital of Los Angeles. This pilot study will test the feasibility of a practical ED-based intervention designed to introduce chronic asthma care into the ED setting. The findings will provide preliminary data for a multi-center randomized clinical trial to test the impact of incorporating into the ED, a parent-completed asthma assessment questionnaire on reducing future asthma ED visits and asthma morbidity.
Defining Population Health for Children with Medical Complexity
Funder: Lucile Packard Foundation for Children's Health
Principal Investigators: Paul Chung, MD, MS, PI; Elizabeth Barnert, MD, MPH, MS, Co-PI
Improving the health of populations is one of the Triple Aims serving as foundations for the Affordable Care Act. Children with medical complexity (CMC), a subset of children with special healthcare needs (CSHCN), account for only 3% of US children but up to 40% of child Medicaid expenditures. CMC constitute a particularly interesting and important population. In part because CMC have a wide array of underlying illnesses, consensus population health outcomes for this group are lacking.
Identifying a set of key outcomes important for the vast majority of CMC would help researchers, healthcare systems, and policymakers to design better strategies to improve care experiences and reduce healthcare costs for this population. To address this, our mixed-methods project aims to:
The project uses systematic literature review, key informant interviews, and group concept mapping with a diverse group of stakeholders around the country. The goal is to recommend consensus outcomes and to identify measurement gaps that will guide healthcare research, practice, and policy agendas for CMC.
Part I: Group Concept Mapping Introduction
Part II: Children with Medical Complexity Sorting & Rating
Designing Medical Homes for Children with Medical Complexity
Funder: Health Resources and Services Administration
Principal Investigator: Thomas Klitzner, MD, PhD, PI; Ryan Coller, Co-PI
This mixed-methods study proposes to identify preventable risk factors for hospitalization among children with medical complexity, and to pilot test a novel intervention designed to reduce hospital utilization by targeting those risk factors within a medical home caring for this population of complex children. Phase 1 of the study, which consisted of qualitative in-depth interviews, a systematic literature review and a national expert panel meeting, concluded in 2014. Findings from Phase 1 of the study were used to design a patient-centered intervention that is currently being tested through a randomized controlled trial as part of Phase 2 of the study.