In Ontario, only 1% of children have complex chronic conditions, but their impact on the health care system is substantial, accounting for a sizable portion of all child health care spending. Children with medical complexity are those who have many health problems, see several specialists, often need home care, and are at risk of being continuously sick. Examples include, but are not limited to, children with complex cardiac disease, autism with severe behavioural concerns, or cancer patients with ongoing challenges in multiple areas.
Although this population is large, defining it precisely has been challenging. Different studies have used different definitions that focus on family needs, diagnoses, functional limitations, or health care resource use, but rarely all of these together. As a result, it has been difficult to capture a full picture of children with medical complexity and to develop better care models for them.
In a review published in Pediatrics, researchers have developed a framework that defines this population of children in terms of their needs, chronic conditions, functioning, and health care use. They hope that having this framework in place will improve health outcomes for these children, and potentially reduce the financial burden on the health care system.
“Individually the conditions are often rare, but collectively they share common consequences such as larger health care needs, dependence on technology or home care to maintain quality of life, and a greater risk of frequent hospital visits,” says Dr. Eyal Cohen, lead author of this study and a paediatrician and project investigator at The Hospital for Sick Children (SickKids). “The medical fragility and intensive care needs of these children are not easily met by existing health care models.”
Medical success leads to more chronic, complex health problems
Health care delivery for children has changed and continues to evolve – particularly in hospitals. Because of medical advances and improved treatments, the survival rates of premature babies and those born with life-threatening conditions have increased. These medical successes, in turn, have likely resulted in a rise of chronic conditions and childhood disability. While paediatric hospitals in the past primarily dealt with isolated health problems, today hospitals care for children with more complex diseases that have an enormous impact on the child, family, and community.
In fact, in a study published in the Journal of the American Medical Association (JAMA), the authors (including Cohen) found that a large portion of costs at children’s hospitals are accounted for by frequent readmissions. The study was a retrospective cohort analysis of 317,643 patients admitted to 37 US children’s hospitals during 2003. It found that 21.8% of patients were readmitted to hospital within a year of their first admission and 2.9% were readmitted 4 or more times.
The relatively small number of children who were readmitted 4 or more times within a year accounted for 18.8% of all hospital admissions and 23.2% of hospital costs. The most common patients who are frequently readmitted are children with complex chronic conditions such as those with cerebral palsy.
“The fact that this group of kids keep coming back suggests that more planning of discharge care is needed to ensure a safe transition from the hospital,” explains Cohen. “Without better coordination and access to services and outpatient service providers, readmission may be unavoidable for these patients because the health care system is not meeting all of the patient and family's needs.”
The framework referred to in the Pediatrics review suggests a family-centred system of care that encourages self-management by improving accessibility of services and information.
According to Cohen, improved quality of care for children with medical complexity depends on better integration of patient care between the hospital and the community. “This would mean establishing strong links between the tertiary care facility and health care services such as rehabilitation centres, schools, transitional care and other facilities in a community-based setting,” he says.