Neonatal/Pediatric Complex Care Clinic (CoIIN) Project

Grants and Contracts Details


The Kentucky Office for Children with Special Health Care Needs (OCSHCN) gathered a group of stakeholders from around the state to discuss better ways to serve children with medical complexity (CMC). The stakeholder group identified and prioritized areas that need to be addressed in order to improve care for CMC in our state. A multicenter federal grant opportunity became available around the same time and Kentucky applied to be one of 10 state teams to participate in the grant. The purpose of the project is to develop and implement innovative care delivery models for CMC using a Collaborative Improvement and Innovation Network (CoIIN) approach. The collaboration within the CoIIN is facilitated through a virtual learning network hosted on a central online workspace/data hub. Additionally, coordination and information sharing takes place during structured in-person learning sessions that bring together representatives from each team to facilitate collaborative learning, dissemination and spread. Each state team within the CMC CoIIN will be working on individual projects. The overall goals of each project are three-fold: • Improve the quality of life for children with medically complex conditions; • Improve the well-being of their families; and, • Increase the cost-effectiveness of their care. Within the broad children with special health care needs (CSHCN) population, a smaller number are defined as children with medical complexity (CMC). While there is some variation in the definition used by different stakeholders in describing CMC, a 2016 clinical report by the AAP characterizes CMC as children who have “multiple significant health problems that affect multiple organ systems and result in functional limitations, high health care need or utilization, and often the need for or use of medical technology” Estimates from the literature tell us that although CMC comprise less than 1% of all children they account for about one-third of overall health care spending for children. The high overall spending on health care for CMC does not routinely translate into superior delivery quality or health outcomes. The system of care is often fragmented with little coordination of services and poor communication between care providers and with the families. Dr. Goldstein will lead one of the projects for the Kentucky State Team and contribute data to CoIIN from patients and staff evaluating a new Infant Complex Care Cinic at Kentucky Children’s Hospital. The Infant Complrx Care Clinic aims to improve care for children, birth through 5 years, with complex medical conditions which began at birth or during infancy, by creating a family centered, comprehensive clinic which provides access to experienced medical providers, a nurse navigator/care coordinator, social worker, nutritionist and developmental interventionists (PT, OT and SLP). The primary mission of the clinic will be coordination of medical care by maintaining communication with subspecialists, interventionists and families. Patient care meetings will take place to discuss a shared plan of care for each patient; all members of the care team will be part of the meetings. All families attending the clinic will be asked to complete a survey after attending the clinic for 12 and 24 months. We plan to survey 150-200 families. Providers and staff will also be invited to complete a satisfaction survey in 6-month intervals. The study period will be approximately 18-24 months. We plan to adapt the clinic structure and services based on feedback from the surveys. UK will collect and submit data to the grant coordinating center for CoIIN from the two surveys (which have been revised to apply to aspects of the Infant Complex Care Clinic,) one for families the other for providers and staff.
Effective start/end date7/1/206/30/21


  • KY Cabinet for Health and Family Services: $51,824.00


Explore the research topics touched on by this project. These labels are generated based on the underlying awards/grants. Together they form a unique fingerprint.