Current Research Projects

ACTIV: 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 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. 

CoTS: 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. 

TEAM-UP: Transition Education & Mentorship – Uniting Peers 

We have developed a peer mentoring program to help youth with special health care needs transition from pediatric to adult health care. The program will match youth with special health care needs between the ages of 17-18 who are in the process of trying to find an adult health care provider, with another youth who has successfully made the transition. We will provide training and support for youth in the mentorship role. We will then study what works and what was challenging about this program by asking mentors and youth to answer survey questions and talk with us through an interview. 

Secondary Data Center

Directed by Drs. Jay Berry (Boston Children’s Hospital, Harvard Medical School) and Matt Hall (Children’s Hospital Association), the CYSHCNet Secondary Data Center catalyzes retrospective analyses on prioritized topics using population-based databases and surveys.  Findings from the analyses inform prospective, multi-site network projects.  The findings also support the research of emerging investigators, including their career development award applications.

Databases

  • All Payor Claims Databases
  • Kids’ Inpatient Database
  • IBM Watson Marketscan Medicaid Database
  • Medical Expenditure Panel Survey
  • National Inpatient Sample
  • National Survey of Children’s Health
  • Nationwide Readmissions Database
  • Pediatric Health Information System (PHIS)

Research

Topics of secondary data research in children and youth with special healthcare needs and in children with medical complexity include:

  • Adverse Childhood Events
  • Chronic Medication Use
  • Disability and Social Security Income
  • Emergency and Urgent Care
  • Health Services of Adolescents and Young Adults
  • Hospital Readmissions
  • Medical Equipment and Supplies
  • Mental Health
  • Multimorbidity
  • Opioid Exposures
  • Neonatal and Post-Acute Facility Care
  • Perioperative Care and Outcomes

Secondary Data Center Projects

  • Outpatient Prescription Opioid Use in Pediatric Medicaid Enrollees Wish Special Health Care Needs
  • Chronic Medication Use in Children Insured by Medicaid: A Multistate Retrospective Cohort Study
  • Hospital Readmission of Adolescents and Young Adults with Complex Chronic Disease
  • Variation in Hospitalization Rates Following Emergency Department Visits in Children with Medical Complexity
  • Distinguishing Children with Higher-Severity Neurological Impairment
  • Complicated Nature of Medical and Social Complexity of U.S. Children
  • Multimorbidity in Children with Neurological Impairment
  • Low-Resource Use Emergency Department Visits in Children with Medical Complexity
  • Age Trends in Types of Hospitals Used by Adolescents and Young Adults with Complex Chronic Conditions
  • Mental Health Conditions in Children with Medical Complexity
  • Hospital Readmission and Emergency Department Visits after Discharge from Neonatal Intensive Care
  • Respiratory Illness in Children with Neurological Impairment
  • Characteristics and Healthcare Use of Children Using Medicaid Enrolled Due to Disability
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