Complex Care for Kids Ontario (CCKO)

Complex Care for Kids Ontario (CCKO): A Patient- and Family-centred Implementation and Evaluation of Care Coordination for Children With Medical Complexity

There are ~6,200 children in Ontario with special and complex healthcare needs requiring multiple services from many different doctors and other healthcare providers. These children are at a high risk of missed, duplicated or inappropriate care, and extraordinary financial burden and stress on families. While small in number (<1% of Ontario kids), these children use 1/3 of all child healthcare resources, and are known to desperately need coordinated care to optimize their health. Complex Care Kids Ontario (CCKO) brings together researchers, children and families, and healthcare providers from across Ontario to develop, implement and evaluate an evidence-based and coordinated model of care for every child with medical complexity in Ontario.

Inclusion Criteria (Meets at least ONE criterion from EACH of the following four conditions):

• Technology dependent and/or users of high intensity care
• Child is dependent on mechanical ventilators, and/or requires prolonged IV administration of nutritional substances or drugs and/or is to have prolonged dependence on other device-based support. For example: tracheostomy tube care/ artificial airway, suctioning, oxygen support, or tube feeding
• Child has prolonged dependence on medical devices to compensate for vital bodily functions, and requires daily/ near daily nursing care, e.g., cardiorespiratory monitors; renal dialysis due to kidney failure
• Fragility
• The child has severe and/or life-threatening condition
• Lack of availability and/or failure of equipment/technology or treatment places the child at immediate risk resulting in a negative health outcome
• Short-term changes in the child's health status (e.g., an intercurrent illness) put them at immediate serious health risk
• Chronicity
• The child's condition is expected to last at least six more months
• The child's life expectancy is less than six months
• Complexity
• Involvement of at least five healthcare practitioners/ teams and healthcare services are delivered in at least three of the following locations: Home, School/Nursing school, Hospital, Children's Treatment Centre, Community-based clinic (e.g. doctor's office), Other (at clinician's discretion)

Exclusion Criteria:

• High Utilization of hospital level care
• ≥ 3 hospitalizations, ≥ 2 ICU admissions, ≥ 30 days of total hospitalization in previous 3 months, excluding newborn admission
• Patient with tracheostomy and home ventilation
• Medical Status is deemed highly fragile and the need for close follow-up is deemed essential by both referring and triaging team
• Already followed by a complex care team
• >16.0 years of age
• Inadequate English language skills to comprehend study questionnaires