title: Children with medical complexity: an emerging population for clinical and research initiatives.
abstract: Children with medical complexity (CMC) have medical fragility and intensive care needs that are not easily met by existing health care models. CMC may have a congenital or acquired multisystem disease, a severe neurologic condition with marked functional impairment, and/or technology dependence for activities of daily living. Although these children are at risk of poor health and family outcomes, there are few well-characterized clinical initiatives and research efforts devoted to improving their care. In this article, we present a definitional framework of CMC that consists of substantial family-identified service needs, characteristic chronic and severe conditions, functional limitations, and high health care use. We explore the diversity of existing care models and apply the principles of the chronic care model to address the clinical needs of CMC. Finally, we suggest a research agenda that uses a uniform definition to accurately describe the population and to evaluate outcomes from the perspectives of the child, the family, and the broader health care system.
authors.affiliation: Division of Pediatric Medicine, Hospital for Sick Children, 555 University Ave, Toronto, Ontario, Canada M5G 1X8. eyal.cohen@sickkids.ca
authors.forename: Eyal
authors.initials: E
authors.lastname: Cohen
authors.forename: Dennis Z
authors.initials: DZ
authors.lastname: Kuo
authors.forename: Rishi
authors.initials: R
authors.lastname: Agrawal
authors.forename: Jay G
authors.initials: JG
authors.lastname: Berry
authors.forename: Santi K M
authors.initials: SK
authors.lastname: Bhagat
authors.forename: Tamara D
authors.initials: TD
authors.lastname: Simon
authors.forename: Rajendu
authors.initials: R
authors.lastname: Srivastava
mesh_terms: D002648:Child; D002662:Child Health Services / Q000458:organization & administration*; D019988:Children with Disabilities; D006302:Health Services Research / Q000458:organization & administration*; D006801:Humans