Young adults with childhood-onset complex chronic conditions (4Cs) who are hospitalized have longer lengths of stay and higher costs and readmission rates than their counterparts without 4Cs, new Canadian data demonstrate.

In a retrospective cohort study of 19,915 hospitalizations among 15,072 young adults (ages, 18-39 years), 4Cs were present in 6.7% of hospitalizations, 10.7% of hospital bed-days, and 5.4% of patients overall. The young adults in this study were discharged from 29 hospitals in Ontario from January 1 to December 31, 2018.

“The results suggest that this population should be prioritized for targeted measures to reduce inpatient stays and improve care,” wrote Sarah L. Malecki, MD, doctoral student at the University of Toronto, Toronto, and coauthors.

The findings were published on January 28 in JAMA Network Open.

Transitioning to Adult Care

The most prevalent pediatric conditions in the study population were hereditary anemias (26.0%), cystic fibrosis (17.0%), and cerebral palsy (11.8%).

Young adults with 4Cs were more likely to have longer hospital stays (relative ratio [RR], 1.62), higher total costs (RR, 1.65), more prescribed medications (RR, 1.26), fewer advanced imaging scans (RR, 0.85), and higher 30-day readmission rates (RR, 1.59) than those without 4Cs. No significant differences were observed between those with vs without 4Cs for iICU admissions (RR, 1.05) or in-hospital deaths (RR, 1.43).

The poorer outcomes may stem from the change in support when children with 4Cs transition to adult care, Hiten Naik, MD, internal medicine physician and research fellow at the University of British Columbia in Vancouver, told Medscape News Canada.

Younger patients in hospitals are a relatively small group, and those with 4Cs are a small subset. Hospital physicians thus see fewer of these patients, “and that may contribute to poor outcomes,” said Naik, who did not participate in the study. “Children’s hospitals may have more specialists in the 4Cs and may be better able to support them. When they transition to adult care, it’s sort of a different world, and they may not get the same level of support. That can be a challenge for patients to navigate.”

Doctors in the hospital may not always have as much familiarity with the 4Cs, so better patient support in an outpatient setting is important before they come in with emergencies, Naik said. “They should also have a care plan set up, so that when they do arrive at the hospital, a specialistcan be contacted and facilitate the best care for them.”

Patients are living longer into adulthood with cystic fibrosis, which is one of the most common diseases in the study, Naik added. “It will be important that doctors get help from the specialists, and that’s where telehealth and teleconsults may be valuable.”

Bridging the Divide

“Adult hospitals and pediatric hospitals can collaborate more on bridging the divide we already know exists,” Malecki told Medscape News Canada. “That transition issue is huge. We adult providers need to work with pediatric providers in institutions and figure out what we don’t have that they may have had in pediatrics and how we can create space and resources,” she added. “When they come into hospital, do they need someone to come and see them while they are there? Could an additional service offer something? Those are some of the things we could explore.”

With the capacity issues currently facing Canada’s health system, the longer lengths of stay and increased readmissions can have a large impact, Malecki said. Having shorter stays and fewer readmissions also reduces the burden on patients and families and cuts healthcare costs.

Their findings will have implications for funders, policymakers, providers, and health system administration, Malecki said. “Now we’re seeing that children with complex chronic diseases are increasingly surviving to adulthood, and we have this emerging population in the adult healthcare system, but we just don’t have the infrastructure yet to support it in the way we need.”

“This young group of adults with complex childhood-onset conditions scored lower on the Charlson Comorbidity Index, but we think that’s because it doesn’t capture a lot of these conditions that are starting in childhood,” she said. “It may not be a helpful tool for capturing outcomes in this population. We might need other predictive indices to capture the complexity and predict outcomes.”

The study was supported by the Edwin S.H. Leong Centre for Healthy Children at the University of Toronto, a grant from the Canadian Institutes for Health Research, and GEMINI, a research program based at Unity Health Toronto. Malecki was supported by a Vanier Canadian Graduate Scholarship from the Canadian Institutes for Health Research. Naik reported having no relevant financial relationships. 

Marcia Frellick is an independent healthcare journalist and a regular contributor to Medscape.