Young adults with complex childhood conditions experience longer hospital stays, higher readmissions

Young adults living with complex chronic conditions that began in childhood – such as sickle cell disease and cystic fibrosis – face significant challenges when navigating the adult healthcare system. A new study published in JAMA Network Open reveals these individuals experience longer hospital stays, higher rates of readmission, and increased utilization of hospital resources compared to their peers.

A Growing Population, Limited Understanding

As more children with medically complex conditions survive into adulthood, a critical gap in understanding has emerged regarding how these conditions impact their care within adult hospitals. Researchers, led by a team at The Hospital for Sick Children (SickKids), sought to address this knowledge deficit.

The study found that this population, representing 6.7 percent of young adult hospitalizations, accounts for 10.7 percent of all hospital bed-days and higher overall costs. Hospital stays for these young adults are, on average, 62 percent longer, and their 30-day readmission rates are 59 percent higher than other young adults.

“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,” explains Dr. Sarah Malecki, a PhD student in the Cohen Lab at SickKids and the study’s first author. “We found that this small portion of the population ends up having a disproportionate impact on the adult healthcare system.”

The Need for Improved Transition Pathways

The research involved a retrospective review of over 19,000 acute-care hospitalizations of young adults aged 18 to 39 in 2018. The analysis highlighted that these conditions often affect multiple organ systems, requiring ongoing, specialized care. While comprehensive, multidisciplinary care teams are common in pediatric hospitals like SickKids, similar approaches are less prevalent in adult care settings.

Sickle cell disease, cystic fibrosis, and cerebral palsy were among the most frequent diagnoses observed in adult medical admissions related to these childhood-onset conditions. The study suggests opportunities to improve support for these young adults, including stronger transition programs, specialized adult clinics focused on these conditions, and tools to identify those at risk of prolonged hospital stays or readmissions.

Dr. Eyal Cohen, a staff physician and Senior Scientist at SickKids, emphasizes the difficulties patients and families face during the transition to adult services, describing it as “falling off a cliff.” He stresses the need for collaboration between primary care providers, adult specialists, health systems, and policymakers to maintain access to excellent care for these young people.

Data-Driven Solutions for Better Care

Researchers analyzed data from 29 adult hospitals across Ontario using GEMINI, a database combining administrative and clinical data from electronic medical records. Dr. Amol Verma, a Clinician-Scientist at St. Michael’s Hospital, Unity Health Toronto, notes that traditional approaches to adult hospital care and health outcome analysis don’t effectively apply to young adults with these complex childhood conditions.

He highlights an “urgent need to link paediatric and adult healthcare data” to identify at-risk patients and develop improved transition systems. The study’s scope, encompassing young adulthood, captures challenges that extend far beyond the initial transfer from pediatric to adult care.

Dr. Malecki, who is also an internal medicine physician, explains that transition isn’t a single event but an ongoing process. This study, she says, begins to address the impact of pediatric medical complexity on young adult hospital use after the transfer to adult care. Further research is planned to follow these patients into mid-adulthood, examining the natural history of these conditions over time.

Frequently Asked Questions

What conditions were most commonly seen in this study?

Sickle cell disease, cystic fibrosis, and cerebral palsy were the most common diagnoses for adult medical admissions in the study.

How much longer are hospital stays for young adults with these conditions?

Hospital stays are 62 percent longer for young adults with complex childhood-onset conditions compared to other young adults.

What was the scope of the data used in this study?

The study was a retrospective review of more than 19,000 acute-care hospitalizations among young adults aged 18 to 39 in 2018, analyzing data from 29 adult hospitals across Ontario.

As healthcare systems grapple with the evolving needs of this growing population, will a more coordinated and specialized approach to care emerge to bridge the gap between pediatric and adult medicine?