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:
Children and Youth with Special Health Care Needs National Research Network (CYSHCNet)
Funder: University of Colorado School of Medicine (HRSA)
Principal Investigators: Carlos Lerner MD, MPhil Co-I; Paul Chung, MD, MS, Co-I
CYSHCNet is a network of committed researchers, families, clinicians, and administrative and policy partners across nine sites including UCLA who work together strategically to accelerate the generation and application of knowledge needed to care for CYSHCN and their families. The network, spearheaded by Children’s Hospital Colorado and Boston Children’s Hospital, strives to conduct nationally-relevant health systems research and to increase research capacity by training emerging CYSHCN investigators. The goals of this network are to:
Designing Medical Homes for Children with Medical Complexity
Funder: Health Resources and Services Administration
Principal Investigators: 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.
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.
Medical Trauma and Resilience in Children and Youth with Special Health Care Needs: Child and Family Perspectives on Coping with Inflammatory Bowel Disease and The Acceptability of Virtual Reality to Mitigate Pediatric Medical Trauma: An Exploration of Child and Parent Perspectives in a Pediatric Infusion Center
Funder: Children and Youth with Special Health Care Needs Network (CYSHCNet)
Principal Investigator: Molly Easterlin, MD, MS
Children and youth with special health care needs (CYSHCN), such as those with chronic illnesses like inflammatory bowel disease (IBD), often suffer medical trauma from frightening and painful medical procedures. Such trauma reduces patients’ quality of life and can have long lasting negative effects on mental and physical health. This qualitative study examines the experience and impact of chronic illness and repeated medical procedures on pediatric patients with IBD and their parents, potential coping mechanisms, and the feasibility and acceptability of a virtual reality intervention to mitigate the negative impact of medical trauma. It has the potential to elucidate the key components of interventions that can effectively improve health and well-being for both CYSHCN patients and families exposed to medical trauma.
Screening for early literacy delays in preschool children
Funder: UCLA CDI Seed Grant
Principal Investigators: Sai Iyer, MD; Maryanne Wolf
Children develop early literacy skills in the preschool age that are predictive of their later reading abilities. Screening for early literacy delays in the preschool age allows the identification of children at risk for later reading problems and provides the opportunity for early intervention.(2) There is a growing body of research that suggests that later reading problems can be prevented by intervention in the preschool years and early grades. Early literacy screening may be available to some children through early childhood education settings. However, access to quality preschool education is not yet universal, and many children may not be identified until later in elementary school. Developmental screening is an integral part of pediatric primary care.(5) All preschool children do see their pediatrician for annual well child care (WCC) visits, making this an ideal setting for universal literacy screening of all children prior to school entry. Our aim is to develop an effective screening strategy for early literacy delays, that is practical within the context of WCC, thereby providing a ‘medical model’ to the early detection of delays in literacy development.