Caring for Children and Youth with Medical Complexity: Can we do better?

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CAPHC and the Complex Care Community of Practice are proud to present a

Guideline for the Management of Medically Complex Children and Youth Through the Continuum of Care

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Children and youth with medical complexity (CMC) share four defining characteristics. The first is the presence of one or more complex chronic conditions that are often multisystem and severe. The second is a functional limitation that is often significant and causes the child/youth to be reliant on technology such as feeding tubes and tracheostomies. The third is that CMC have high healthcare utilization, requiring specialized care and services from different providers in multiple settings. The fourth is that caregivers identify high healthcare service needs such as care provision in the home and care coordination: these can have significant social and financial impacts on the family (1).  There is no national consensus for the definition of CMC. This Guideline attempts to operationalize the definitional framework to help clearly identify this population for the purpose of epidemiology, building knowledge, setting priorities for clinical interventions and the development of a research agenda. 

Clinical and technological advances have allowed children and youth with chronic illnesses to live longer, resulting in the need for multidisciplinary care and coordination of services amongst care providers.  Although these advances indicate success in neonatal, medical, and surgical care, a consequence is that some children and youth, who would not have survived in the past, now live with significant physical and neurologic disorders (2).  An Ontario health care study identified that 0.67% (15,771) of children fit the definition of children with medical complexity and of that 11.8% (1863) were also technology dependent. This small group of children with medical complexity accounted for one-third of child health spending (3) and the cost was not only related to hospitalizations but also extended to the community setting.

Technology-dependent children/youth with complex medical conditions are 3 times more likely to require intensive care hospitalization and are placing newer and greater demands on our current health care system (4-6).  They also account for 10% of hospital admissions and approximately one-quarter of hospital days (6). Approximately 32% of these admissions are deemed to be potentially preventable, as almost 64% (two-thirds) can be attributed to system deficiencies such as poor care coordination and medical errors related to the complexities of care. (7,8)

The Canadian Association of Paediatric Health Centres (CAPHC) prioritized the need for a national effort to support system change in the approach to health care for this vulnerable population. The Complex Care Community of Practice (CoP), established in 2013, has mobilized individuals, organizations and families across Canada with a vision to enhance the current standards of care for children and youth with medical complexity (CMC).

 CAPHC CoP members included families; clinicians from paediatric acute care, homecare, rehabilitation services, the Provincial Council of Maternal and Child Health (PCMCH), health care administrators and policy makers. External stakeholders were engaged and endorsement for the Vision and Mission was received from The Canadian Family Advisory Network and the Canadian Paediatric Society. Accreditation Canada was consulted and participated in discussions to ensure that recommendations on care planning and health care transitions aligned with current standards.

The Complex Care CoP agreed that the development of Canadian guidelines would enable and influence a needed pan-Canadian change in the delivery of care for this unique population. Successful programs and services for children/youth with medical complexities and their families have been developed across the country. Yet, there remains a significant degree of variation in practice and delivery of health services to this vulnerable population. The needs of CMC and their families are unique to each individual and situation.  The ultimate goal is to standardize care practices while providing personalized services, improving safety and quality as well as ensuring accessible and equitable care for all Canadian CMC and their families.

We wish to thank everyone who participated in the CoP and the development of this guideline!

Access the Guideline here

View the CAPHC Complex Care Community of Practice Webinar 

  1. Cohen E, Kuo DZ, Agrawal R, Berry JG, Bhagat SKM, Simon TD, et al. Children With Medical Complexity: An Emerging Population for Clinical and Research Initiatives. Pediatrics [Internet]. 2011 Mar 1
  2. Burke RT and Alverson B. Impact of Children with Medically Complex Conditions. Pediatrics 2010 (Oct.1); Vol. 126, No. 4, pp. 789 -790.
  3. Cohen E,Berry J, Camacho X, Math M, Anderson G, Wodchis A, Guttmann A. Patterns and  Costs of Health Care Use of Children with Medical Complexity. Pediatrics 2012;130:e1463-70
  4. Robert T. Burke and Brian Alverson Impact of Children With Medically Complex Conditions Pediatrics Vol. 126 No. 4 October 1, 2010 pp. 789 -790
  5. Burns KH, Casey PH, Lyle RE, Bird TM, Fussell JJ, Robbins JM. Increasing prevalence of medically complex children in US hospitals. Pediatrics. 2010;126(4):638–646
  6. Simon TD, Berry J, Feudtner C, et al. Children with complex chronic conditions in inpatient hospital settings in the United States. Pediatrics. 2010;126(4):647– 655
  7. Sacchetti, A.,Sacchetti, C., Carraccio, C., (2000). The potential for errors in children with special health care needs. Acad EmergMed. 7. Pp 1330-1333.
  8. Slonim, A., Lafleur, B., Ahmed, W., (2003). Hospital reported medical errors in children. Pediatrics. 111. P617-621.