By: Jelena Djurkic, Communications Manager, Research Institute and Strategic Initiatives, The Hospital for Sick Children (SickKids)

Young adults with chronic childhood-onset conditions experience longer hospital stays, higher readmission rates and greater use of resources in adult hospitals, according to new research from The Hospital for Sick Children (SickKids). 

More children with medically complex conditions are surviving into adulthood, but researchers have had limited visibility into how these conditions influence adult hospital care. 

Published in JAMA Network Open, the study found that young adults with complex chronic childhood-onset conditions, such as sickle cell disease and cystic fibrosis, experience significantly longer hospital stays and higher readmission rates as adults.  

These patients, while representing only 6.7 per cent of young adult hospitalizations, account for 10.7 per cent  of all hospital bed-days and incur higher hospitalization costs. Their stays are 62 per cent​ longer and readmission rates 59 per cent higher than other young adults.  

The research marks one of the first Canadian efforts to examine how complex conditions beginning in childhood as a whole affect hospital use across young adulthood. 

“Young adults with childhood-onset complex chronic conditions are navigating an adult health system that was not built for the type of coordinated care they need,” says first author Dr. Sarah Malecki, a PhD student in the Eyal Cohen Lab at SickKids. “We found that this small portion of the population ends up having a disproportionate impact on the adult health care system.” 

Researchers analyzed over 19,000 acute-care hospitalizations among adults aged 18 to 39 in 2018 using GEMINI, Canada’s largest hospital data sharing network for research and analytics. Complex care teams that integrate multiple disciplines and provide support for patients and families are more established in children’s hospitals such as SickKids, but comparable approaches are less common in adult care. 

As a result, young adults with medical complexity face care gaps, which can feel like “falling off a cliff,” says study co-author Dr. Eyal Cohen, Senior Scientist and Program Head in the Child Health Evaluative Sciences research program at SickKids. 

 “We've made great progress in developing coordinated models of care for children with complex chronic conditions, but we now need to work collaboratively with primary care providers, adult specialists, adult health systems and policymakers to ensure that these young people continue to have access to excellent care after they leave the paediatric system.” 

The study team suggests prioritizing improved transition pathways, adult specialty clinics for childhood-onset conditions, and tools to identify patients at risk of prolonged stays or readmissions. The findings also highlight a need to link paediatric and adult health data to understand long-term outcomes across young adulthood and guide policy development.