When kids with complex needs become adults, care falls apart

By Louise Kinross

Young adults with childhood conditions like cerebral palsy have longer, more costly hospital stays and are more likely to be readmitted within 30 days, according to a new study in JAMA Network Open led by researchers at The Hospital for Sick Children (SickKids) in Toronto.

“As the number of children with complex chronic conditions surviving to adulthood continues to increase, this population will continue to grow,” says lead author Dr. Sarah Malecki, a general internist and PhD student in the Cohen Lab at SickKids. 

But the adult healthcare system “was not built for the type of coordinated care they need,” she says.

Researchers reviewed data related to almost 20,000 hospital admissions by adults aged 18 to 39 who were discharged from 29 acute-care hospitals in Ontario in 2018. 

Young adults with complex congenital conditions like cerebral palsy, sickle cell disease and cystic fibrosis represented 6.7 per cent of those admissions, yet they used almost 11 per cent of all hospital bed days. 

The study found these patients stayed in hospital 62 per cent longer than other young adults, an average of 4.7 days vs 2.7. The cost of their care was 65 per cent higher, Dr. Malecki says, and they were 59 per cent more likely to be readmitted within 30 days.

“I have heard too many times from patients and families that the transition to adult services can feel like ‘falling off a cliff,'" says co-author Dr. Eyal Cohen, a pediatrician with SickKids’ complex-care team who heads the hospital’s Child Health Evaluative Sciences.

Coordinated teams that integrate many disciplines to support complex patients in the pediatric system don't exist in adult care, the researchers say. 

“Creating adult complex-care teams is certainly one way to prioritize this population and could result in reduced inpatient stays and improved care,” Dr. Malecki says.

It’s hard to fathom, but adult hospitals in Ontario don’t currently have adequate access to a patient’s pediatric records. “Missing this critical information undoubtedly makes it challenging to provide the best, streamlined care,” Dr. Malecki says.

The study found that young adults with complex conditions were less likely to have advanced imaging than nondisabled peers. This could be because imaging equipment and practices aren’t accessible to patients with developmental and physical disabilities, Dr. Malecki says.

The researchers say we need to invest in new models of care to address the unique needs of this adult population.

 “[An adult] clinic mirroring the structure of pediatric complex-care clinics and led by general internists and/or hospitalists could help assess and address challenges in adult system navigation,” they write in the study. “A unified inpatient consultation service could help reduce long lengths of stays and delays in care that may be related to lack of familiarity of the condition or challenges accessing necessary advanced imaging…” 

This study is one of the first Canadian studies to look at how patients with complex childhood conditions as a group use adult acute-care hospitals over time.

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