Young adults with complex chronic childhood-onset conditions such as sickle cell disease and cystic fibrosis experience longer hospital stays, higher readmission rates and greater use of resources in adult hospitals, according to a new study in JAMA Network Open .
More children with medically complex conditions are surviving into adulthood, but researchers have had limited visibility into how these conditions influence adult hospital care.
Led by a team at The Hospital for Sick Children (SickKids) , the study shows that while this group represents 6.7 per cent of young adult hospitalizations, they account for 10.7 per cent of all hospital bed-days and higher hospitalization costs. Their stays are 62 per cent longer than other young adults and their 30‑day readmission rates are 59 per cent higher. This is one of the first Canadian studies to examine how complex conditions beginning in childhood as a whole affect hospital use later in life.
"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 Cohen Lab at SickKids. "We found that this small portion of the population ends up having a disproportionate impact on the adult healthcare system."
Bridging support for lifelong conditions
The study was a retrospective review of more than 19,000 acute-care hospitalizations among young adults aged 18 to 39 in 2018, allowing researchers to examine how medically complex patients use adult hospital care over time.
Many of these conditions affect multiple organ systems and require ongoing involvement across specialties. Complex care teams that integrate multiple disciplines and provide support for families are more established in children's hospitals such as SickKids, but comparable approaches are less common in adult care. Sickle cell disease, cystic fibrosis and cerebral palsy were the most common diagnoses for adult medical admissions in the study.
The team notes the results suggest there may be opportunities to prioritize support for medically complex young adults, such as stronger transition pathways, adult specialty clinics for childhood-onset conditions, and tools to identify patients at risk of prolonged stays or readmissions.
"I have heard too many times from patients and families that the transition to adult services can feel like 'falling off a cliff,'" says study author Dr. Eyal Cohen , staff physician and Senior Scientist and Program Head of Child Health Evaluative Sciences. "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."
Offering insights into adult hospital utilization
Researchers analyzed data from 29 adult hospitals across Ontario using GEMINI, a multi-hospital database that combines administrative and clinical data from electronic medical records.
"This study shows that the typical approaches to caring for older adults in hospital and understanding their health outcomes do not apply well to young adults with complex childhood conditions," notes study author Dr. Amol Verma , Clinician-Scientist, St. Michael's Hospital, Unity Health Toronto. "There is an urgent need to link paediatric and adult healthcare data, which can help us identify patients who are at risk of suffering poor outcomes and design better systems for the transition from paediatric to adult care."
While other studies have examined specific childhood-onset conditions or the first few years after transfer to adult care, this study spans young adulthood and captures challenges that extend well beyond age 18.
"People often think of transition to adult care as equivalent to a transfer, but it's an ongoing process that continues until young adults are firmly connected to the right providers," says Malecki, who is also an internal medicine physician. "This study fills an important evidence gap on beginning to understand how paediatric medical complexity can affect young adult hospital use after transfer to adult care."
She adds that this study marks an important first step in understanding the impact of this population as a whole in the adult healthcare system, supporting future research into specific subpopulations and leveraging data to follow these patients from adolescence into mid‑adulthood. This would allow researchers to look beyond hospital‑based outcomes to better understand the natural history of these conditions over time.
The study was funded by the Canadian Institutes of Health Research (CIHR), Edwin S.H. Leong Centre for Healthy Children and GEMINI.
