Children with complex or chronic health needs often interact with a variety of health care professionals.
These professionals may include physicians, physical therapists, health psychologists, and social workers—just to name a few. Children with complex health needs may also interact with different clinics, health systems, or businesses such as dialysis centers or medical device companies. To navigate the complexity of coordinating a child’s care across these health systems, children and their families benefit from care coordination.
Care coordination refers to communication within health systems and shared responsibilities with service systems that children and families rely on for health. Care coordination is intended to improve the quality of care, reduce the need for hospitalizations or urgent visits, and allow care to be coordinated around each child.
Care coordination and services provided can vary by the patient’s condition, the health system, or the region of the country. There are certain critical aspects of coordinated care that parents should be aware of and advocate for in their child’s care if their child has a chronic or complex health condition.
First, it is important that care coordination is tailored to the patient’s condition and the family’s situation. No single plan will work for all children. The services for each child should be based on a thorough understanding of the patient’s health and family situation and thus be family centered.
Second, it is important that care coordination should have well-defined goals. The responsibilities of the different team members in that care should be defined and understood. Each member of a child’s team should be focused on their area of experience or expertise, and parents should be made aware of what each health care professional is focused on in the child’s care. This plan should ideally be written and shared across clinicians and with the family. The plan should not be considered permanent and needs to be reviewed and updated at regular intervals or with changes in the patient or family’s status.
An ideal care coordination system should also involve a single care coordinator assigned to the family; this person’s job is to be in regular contact with the family and the different health care professionals. It is also ideal that care coordination involve electronic health information systems to allow health information to be shared between clinicians and with the family.
The role of the pediatrician in care coordination is also important. For children who have chronic or ongoing conditions, the general pediatrician can play a valuable role in ensuring that the child’s big picture health questions or developmental processes are met. The pediatrician can check in with the child and family to address developmental milestones, guidance for prevention, and the child’s well-being.
In this month’s JAMA Pediatrics, we include an article that outlines the 10 essential characteristics of care coordination (http://doi.org/10.1001/jamapediatrics.2018.3107).
Published Online: November 26, 2018. doi:10.1001/jamapediatrics.2018.4112
Conflict of Interest Disclosures: None reported.