Many children with inflammatory bowel disease require medication infusions at the hospital every four to eight weeks, often requiring travel and time off from school and work.
But for many children and adolescents, infusions can be done at home or at a local external infusion center. Nationwide Children’s Hospital developed a quality initiative to generate a safe and reliable alternative to hospital-based infusions.
In just over a year, 54 children and teens transitioned to home or external infusions without any serious safety concerns, clinicians and researchers at Nationwide Children’s Hospital report in the Journal of Pediatric Gastroenterology and Nutrition.
“IBD is a lifelong disease, and it can be stressful to deal with. We’re trying to make that easier,” says Shivani Gupta, DO, a clinical fellow in the Center for Pediatric and Adolescent Inflammatory Bowel Disease (IBD Center) at Nationwide Children’s and lead author of the study. “If you’re missing school or after-school activities for every infusion appointment and your parents have to miss work, the days really add up.”
A multidisciplinary team including physicians, a nurse practitioner, social worker, parent, pharmacist, nurses and more used an iterative quality improvement approach to create the program, starting in surrounding counties then expanding into Southeast Ohio, as far as two-hour’s drive away.
“In this case, we’re thinking about improving patient care from the perspective of the patients and families and the impact that receiving medical therapy has on their regular life,” says Jennifer Dotson, MD, MPH co-director of the IBD Center and senior author of the study. “We’re trying to remove barriers.”
“We’re also cognizant that insurance companies are heading in that direction, requesting or mandating home infusions for certain patients to save on costs,” says Dr. Dotson, who is also a principal investigator in the Center for Innovation in Pediatric Practice at the Abigail Wexner Research Institute at Nationwide Children’s. “We wanted to be ahead of the curve by setting up criteria and processes to ensure patients received safe infusions and the same high-quality care at home as during hospital-based infusions."
The team worked with insurance companies to identify good candidates and with Nationwide Children’s Home Care to develop protocols and safety measures.
Home infusions were initially offered to patients 12 and older. In order to qualify, a child must first undergo several regularly-scheduled infusions at the hospital, including a rapid infusion, with no serious complications. Home and off-site infusions are typically delivered as rapid infusions, so ensuring they tolerate them prior to receiving them elsewhere is important, the researchers say.
When they began the program in the fall of 2016, 7% of eligible patients received home infusions. As the infusions proved safe and informal patient and family feedback was positive, the program expanded. By January 2018, nearly half of eligible patients were offered home infusions and 30% were receiving them. A percentage of families declined because they were more comfortable continuing infusions at the hospital.
The team made adjustments as the program grew. Typically blood samples for lab tests were routinely taken during infusion appointments at the hospital but proved challenging during home visits. The team instead took needed lab samples during routine office visits to further prevent extra visits.
The IBD Center has continued to expand home infusion services, which has been well-received by patients and families, Dr. Dotson says. “We hope that our work will also help other centers looking to expand their infusion services. I think there are a variety of different conditions we treat across the hospital that could be amenable to home infusions.”
Gupta SR, Crandall WV, Donegan A, Johnson M, Drobnic B, Oates M, Boyle B, Maltz R, Dotson JL. A quality improvement approach to external infliximab infusions in pediatric inflammatory bowel disease. Journal of Pediatric Gastroenterology and Nutrition. 2019 Jun 18.