Studies


Learn about our active and completed projects.

National Research Agenda

During its first year, CYSHCNet is undertaking a collaborative consensus process to develop and publish a National Research Agenda for CYSHCN. Input from clinical and research experts, family members, and healthcare policy and financing experts is being solicited. This information will be combined with targeted literature searches to identify research gaps and priorities. The national research agenda will be published in late 2018.

Active Research Projects

Assessing Confidence at Times of Increased Vulnerability

Caregivers of children with medical complexity (CMC) may be able to accurately and efficiently evaluate clinically meaningful changes in their child’s health. Single-center studies have observed that parents’ lack of confidence in their child’s health has correlated with their child’s risk of readmission shortly after discharge. If caregiver confidence can be clinically monitored longitudinally in real time, then potential exists not only to link it with downstream health outcomes, but also to target timely interventions to help caregivers at high-risk moments. This pilot study is evaluating (1) feasibility and acceptability of an innovative health information technology to collected repeated measures of caregiver confidence of their CMC’s health over time; and (2) viability of constructing trajectories of caregiver confidence in CMC’s health and relationships among confidence, hospital utilization, and child and caregiver health-related quality of life.


Polypharmacy in Children Using Medicaid

This retrospective project of health services administrative Medicaid claims data from multiple states will assess the use of multiple medications (i.e., polypharmacy) in children, especially those with special and complex healthcare needs.


Hospital Admission from Emergency Department Visits in Children with Medical Complexity

This retrospective analysis of the Pediatric Health Information Systems database will assess demographic, clinical, and health services risk factors for hospital admission in children with medical complexity who present to the emergency department.


Hospital Resource Use for Adolescents and Young Adults with Chronic Conditions

This retrospective project of the Agency for Healthcare Research and Quality’s Nationwide Readmission Database will assess trends in age of the types of hospitals used as well as rates and risk factors for 30-day hospital readmission in individuals age 15-to-30 years with sickle cell, cystic fibrosis, myelodysplasia, type 1 diabetes mellitus, and inflammatory bowel disease.


Opioid Use in Children and Youth with Special Health Care Needs

This project will assess the prevalence and risk factors for opioid exposures in children and youth with special health care needs who are enrolled in Medicaid. The project will also assess the clinical context in which opioids were prescribed (e.g., surgery, dental care, trauma, etc.).


Family and Social Attributes related to Emergency Department as Usual Source of Care for CYSHCN

This project will use the National Survey of Children’s Health to assess relationships between household composition (e.g., single vs. dual parent, number of siblings, etc.) as well as other familial and social attributes on the location of usual source of sick care for CYSHCN.


Co-Management Telehealth Study

Medical home components, including care management and shared care plans, are beneficial to children with medical complexities (CMC). Some CMC are co-managed by a community-based primary care physician (PCP) and a children’s hospital-based complex care provider (CCP). Better integration between these providers may improve efficiency, family experience, and quality of care, while leveraging the benefits of each location. This pilot study will compare video-conferencing among caregivers of CMC, PCPs, and CCPs to a traditional co-management process using several caregiver-reported and utilization outcomes.