Psychosocial readiness ‘far more important’ than age in pediatric IBD transfer

ORLANDO, Fla. — Transitioning a pediatric patient with inflammatory bowel disease into adult gastroenterology care takes ongoing communication, written plans, and confirmation of the patient’s psychosocial readiness, according to an expert at Advances in IBD 2017.

“Children with IBD are not small adults. ... We have to remember that not just as pediatricians, but in our adult colleagues as well,” Sandra C. Kim, MD, said during her presentation. “There are really many similarities ... but I would argue that children and young adults often bear a disproportionate burden in many ways.”

Kim pointed out that clinical presentation of IBD is often more severe in children and diagnosis of patients as young as 10 months old creates a more complex situation and a lifelong psychosocial impact of the disease. Kim estimated that currently pediatric IBD costs anywhere from $14 billion to $30 billion, with significant differences between pediatric and adult patients.

“That really reflects on the severity of the disease and the unique burdens that children and young adults face,” Kim said.

Not only do these patients face a lifelong disease, but they then often develop depression, with somatic depression associated with active disease and use of steroids. These factors, of course, lower the health-related quality of life and then further impact health care utilization.

“If you’re not living your normal life and your quality of life is bad, I’m still not doing my job. And it’s a grade on me and not the child [with IBD],” Kim said.

Various studies show that IBD impacts social aspects, educational success and mental health, all of which affect the transition of a child into adult GI care. She showed that the biggest barriers to transfer of care were poor medical handoff from pediatric to adult GI and the patient’s ability to take responsibility for his or her care.

“We need to be more thoughtful about this. ... Psychosocial readiness is far more important than the chronological age,” Kim said. “The bottom line is [adolescents with IBD] were behind their peers in a lot of areas including educational attainment and moving out of the home at a certain age.”

She explained that the physical transfer of a pediatric patient to an adult practice requires looking at the entire patient in a transition plan.

“Transition and transfer are not the same thing. Transfer of care is when you move from one provider to another. ... Whereas transition is the piece that we need to be doing as pediatricians where it's a planned, it’s purposeful; it’s again a continuum. We are really preparing our adolescent patients so they can gradually become more independent and get to the adult care system. It’s flexible, it’s dynamic and the timing is crucial,” Kim said.

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Pediatric patients have a lower baseline knowledge of disease, so physicians must identify deficits in knowledge to better prepare their patients for transfer. She added that pediatric GI practitioners need to remember that their patients have the normal adolescent hurdles in addition to IBD, so there is still a need to consider the whole patient.

“We think our patients are ready but when you look at readiness scales, they’re not,” Kim said. “We may not be helping our patients acquire the disease knowledge that they need and fostering that ability to advocate for themselves. Part of that may be that we might just not have enough time and limited resources.”

As an example, Kim said only 14% of pediatric IBD practices have a written transition plan for their patients. Kim said pediatric GIs need to use the tools that exist, such as checklists, and work to continually develop better ones.

“We need to continue to engage patients and families actively. Without a doubt, it’s patient-centered care. It’s not about the health care provider. It’s about meeting the needs of the patients and the families and having a better way of doing a hand-off, so a good, written health care transition plan,” Kim said. “There seem to be so many barriers that we deal with as we try to get our young adults from pediatric to adult care but I’m convinced we can make it better.” – by Katrina Altersitz

Reference: Kim S. Clinical Session IA. Presented at: Advances in IBD; Nov. 9-11, 2017; Orlando, Fla.

Disclosures: Kim reports no relevant financial disclosures.