Young adults who grew up with complex chronic conditions, such as sickle cell disease and cystic fibrosis, face longer hospital stays, higher readmission rates, and increased resource use when admitted to adult hospitals, according to a new study published in JAMA Network Open.
The research was led by The Hospital for Sick Children (SickKids) and involved a retrospective review of more than 19,000 acute-care hospitalizations among young adults aged 18 to 39 in Ontario during 2018. Findings indicate that while this group makes up only 6.7 percent of young adult hospitalizations, they account for 10.7 percent of all hospital bed-days and incur higher hospitalization costs. Their hospital stays are on average 62 percent longer than those of other young adults, and their 30-day readmission rates are 59 percent higher.
The study is among the first in Canada to examine how childhood-onset complex conditions as a group affect hospital use into adulthood. Researchers note that many of these conditions involve multiple organ systems and require ongoing care across different specialties. While children's hospitals like SickKids have established complex care teams integrating multiple disciplines, similar models are less common in adult care settings.
The most frequent diagnoses among the study population were sickle cell disease, cystic fibrosis, and cerebral palsy. The team suggests that targeted support for medically complex young adults could include improved transition pathways from pediatric to adult services, specialized adult clinics for childhood-onset conditions, and tools to identify patients at risk of extended stays or repeated admissions.
"I have heard too many times from patients and families that the transition to adult services can feel like 'falling off a cliff,'" said 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."
Data was collected from 29 adult hospitals across Ontario using GEMINI, a multi-hospital database combining 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," said Dr. Amol Verma, Clinician-Scientist at 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."
Previous studies have looked at specific childhood-onset diseases or just the initial years after transfer into adult care; this new research covers challenges throughout young adulthood.
"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," said 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."
Malecki added that this research represents an important first step toward understanding how this population impacts the broader adult healthcare system. She noted it supports further research into specific subgroups and tracking patients beyond adolescence into mid-adulthood—allowing examination beyond just hospital-based outcomes.
Funding for the study came from the Canadian Institutes of Health Research (CIHR), Edwin S.H. Leong Centre for Healthy Children, and GEMINI.
