NDD Care Coordination
Care coordination helps children with NDDs and medical complexity access the right care, in the right place, at the right time. We are investigating how behaviours of concern impact care coordination.
Children with NDDs who have co-occurring medical conditions (e.g. asthma, diabetes, epilepsy), as well as their families, experience difficulty coordinating and navigating health and social care structures and systems to meet their functional needs and thrive in society. Uncoordinated care of children with medical complexity results in a high burden of care for parents and high acute care service use. The Neurodevelopmental Disorders Care Coordination (NDD-CC) program at the Alberta Children’s Hospital addresses these issues by connecting families with support and partnerships they need across medical, educational, and disability services with the goal of providing the right care in the right place at the right time. This collaborative clinical and research partnership has demonstrated that NDD-CC improves care planning, reduces emergency department visits, hospital stays, and physician claims costs. However, these improvements have not been seen uniformly, and many families continue to struggle despite the significant investment from care coordination.
These mixed results are not unique to our program and have become a prominent subject of discussion in the broader complex care coordination community. In seeking explanatory factors for these mixed results, we have recently turned our attention to the relatively under-studied effect of behaviors of concern observed in children who participate in NDD-CC, and the way those behaviors interact with other social and demographic variables to impact quality of life and health care utilization. Behaviors of concern are abnormal behaviours such as aggression or self-injury that threaten the safety of a child or those around them and limit their ability to participate in typical activities of childhood and ability to access needed supports and services. These behaviours are reported by ~75% of NDD-CC families and were the chief complaint for more than 60% of these patients’ emergency department visits in the past year.
Collaborators:
The PN Lab Advisory Council
Care Coordinators Cathy Richard RN and Karen Taylor RN
Dr. Jennifer Zwicker PhD, Associate Professor, Kinesiology, U of C
Dr. Genevieve Curry PhD, researcher and family research partner