Responding to the rising number of children living with complex chronic conditions


Responding to the rising number of children living with complex chronic conditions


Cohen E; Patel H


Canadian Medical Association Journal




Pediatrics; Medical Sciences; Childrens health; Health care access; Chronic illnesses; Primary care


Providing access to excellent community- based care for children with medical complexity is challenging, but necessary. Primary care has undergone substantial reform across much of Canada with the goal of facilitating better care for people with chronic disease (e.g., by better coordination of a multidisciplinary team), but the unique developmental and social needs of chil- dren and youth are rarely incorporated into these changes8 (Appendix 1, available at /lookup/suppl/doi: 10.1503/cmaj .141036/-/DC 1 ). Some primary care providers may be insuffi- ciently trained to manage the many relatively uncommon "orphan" childhood conditions. In many parts of the country, pediatricians may play a large role in the primary care of children with medical complexity, often in collaboration with a family physician. Elowever, eventual tran- sition to adult care may be challenging because it can be difficult to find a similar type of provider in the adult health sector. Further complicating matters, financial incentives to providers in Can- ada to care for children with medical complexity, either in the coimnunity or the hospital setting, are extremely lhnited. Elope remains, however, as pockets of innova- tion have developed across Canada. Collabora- tions focused on hnproving the delivery of care to children with medical complexity have been established within national and international pediatric organizations, and Web-based reposito- ries of information and tools are becoming avail- able. There is an increasing awareness that pro- active, goal-directed care plans are essential for children with medical complexity, just as they are for similar adults, as are continuity, access to health care services and facilitated communica- tion processes. Complex care programs have been established, and many are increasingly being integrated with coimnunity care settings,11 building capacity for the care of children with medical complexity beyond the walls of pediatric hospital centres. Where applicable, transitions to adult care are being facilitated through collabora- tive pediatric-adult programs in some specific populations, and toolkits are being created to bet- ter facilitate transitions for patients and families, as well as providers ( Affiliations: Division of Pediatric Medicine ([Eyal Cohen]), Department of Pediatrics & Child Health Evaluative Sci- ences, The Hospital for Sick Children, University of Toronto; Institute of Health Policy (Cohen), Management & Evalua- tion, University of Toronto, Toronto, Ont.; CanChild Centre for Childhood Disability Research (Cohen), McMaster Uni- versity, Hamilton, Ont.; Division of General Pediatrics (Patel), Montreal Children's Hospital; Department of Pediat- rics (Patel), McGill University, Montréal, Que.


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Cohen E; Patel H, “Responding to the rising number of children living with complex chronic conditions,” Pediatric Palliative Care Library, accessed December 6, 2021,

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