New network for children and youth with special health care needs to improve care systems

A new research network for children and youth with special health care needs (CYSHCNet), led by researchers from the University of Colorado School of Medicine, the hospital Children's Hospital of Colorado and Boston Children's Hospital, will lead, promote and coordinate national research activities aimed at improving their systems of care.

Funded by the US Department of Health and Human Services, the Health Services and Resource Administration (HRSA), the Office of Maternal and Child Health, the 11-site research network will lead, coordinate and promote health systems research for CYSHCN. The work of the network will strengthen the evidence base for the key elements of a comprehensive and high quality care system for CYSHCN. It will address a need for CYSHCN and their families to have evidence on how best to provide and coordinate care for their diseases.

The new network is led by Christopher Stille, MD, MPH, professor of pediatrics at the University of Colorado School of Medicine and Colorado Children's Hospital; Jay Berry, MD, MPH, badistant professor of pediatrics at Harvard Medical School and Boston Children's Hospital; and Charlene Shelton, RN, Ph.D., program officer at the University of Colorado Denver.

We are very proud to lead the new network. It will be a "big tent" for research in child health across the United States, where researchers carry out their activities, policy groups, patient groups and families can work together. We are starting with 11 major institutions and partners, and we will eventually have more. The greater the diversity of the network, the better the information we will have to improve health care for children with special needs across the country. "

Christopher Stille, MD, MPH, professor of pediatrics, faculty of medicine at the University of Colorado and Colorado Children's Hospital

CYSHCNet maintains relationships with Family Voices, the Association of Maternal and Child Health Programs (AMCHP), the American Academy of Pediatrics (APA), Medicaid State Programs and the Children's Hospital Association (CHA) as well as research networks working in other areas of child health. and adolescent health. These stakeholders and others collaborated on the development of a national research program for CYSHCN, which will be released later this year. In collaboration with the CHA, the network hosts teams working on secondary database projects related to important health system themes for the CYSHCN, including emergency and urgent care, the transition to health care, and health care. Adulthood, disability and income from social security, multimorbidity, neonatal care, post-acute care and chronic drug use.

The first of these secondary database projects, led by Dr. James Feinstein (University of Colorado) and Dr. Berry, devoted to opioid exposure in CYSHCN, was published in the Journal of Pediatrics. The results of the study will further educate parents and clinicians about opioid prescribing at CYSHCN and, if so, when and how follow-up should occur. The findings will also inform opioid prescribing guidelines and policies for the CYSHCN at the hospital and government levels, such as the Medicaid Pharmacy and Therapeutics Committees, to ensure the safety of the use of drugs. Opioids in CYSHCN. A second completed study on polypharmacy in CYSHCN was also recently published in the Journal of Pediatrics.

"The kernel of data and secondary badysis of the network is booming," said Dr. Berry. "Over time, the core will fuel a portfolio of compelling health systems research on CYSHCN."

Potential network projects underway include badessing factors that increase parents' confidence in caring for their children in times of stress; collaborative models between academic medical centers and community clinicians for children with medical complexity; and a peer mentoring program to help youth with special health care needs transition from pediatric health care to adult health care.