November 16, 2020
2 min read
Opipari-Arrigan L, et al. Poster 574. North American Cystic Fibrosis Conference; Oct. 20-23, 2020 (virtual meeting).
Opipari-Arrigan reports no relevant financial disclosures. This study was funded by the Cystic Fibrosis Foundation.
A digital behavior and nutrition intervention platform for children with cystic fibrosis was feasible and demonstrated high accessibility and satisfaction in clinical care among families and clinicians, researchers reported.
“There have been 2 decades of research on this intervention that have demonstrated that it works and it’s included in clinical guidelines for both preschool and school-aged children with cystic fibrosis,” Lisa Opipari-Arrigan, PhD, pediatric clinical psychologist and associate professor of pediatrics at Cincinnati Children’s Hospital Medical Center, said during a presentation at the virtual North American Cystic Fibrosis Conference. “Given the strong efficacy data, we have been working with the CF Foundation to translate this research-based intervention into clinical care and to evaluate its effectiveness.”
The nonrandomized study evaluated the Be in Charge behavior and nutrition intervention, which aims to promote healthy growth in children with cystic fibrosis. The intervention has been proven effective when delivered in person. Researchers partnered with clinicians, parents of children with cystic fibrosis and technology experts to translate Be in Charge into a digital platform.
The study included 34 children (mean age, 6 years; 52.9% girls; mean BMI, 36 kg/m2) at seven pediatric cystic fibrosis care centers.
Families were able to access the web-based program via desktop and mobile apps and clinicians viewed results on the staff care center portal. Families enrolled at their clinic visit and independently used the digital platform to complete psychoeducation sessions, track daily diet and perform skill practices. Care teams reviewed results and offered personalized support as needed. Quality improvement experts created implementation strategies to aid clinics and families in optimizing the results.
The objective of this study was to evaluate the digital platform on weight change, daily calories and estimated energy requirement when integrated into care and to assess feasibility, accessibility and satisfaction.
Researchers observed significant improvement in preliminary effectiveness measures among children with cystic fibrosis, with an average weight gain of 2.8 kg weight gain from baseline to post-program, an average increase in intake of 246 calories per day and an average increase in estimated energy requirement of 12.5%, according to results presented.
The researchers reported the digital platform was feasible to integrate into clinical care. Eighty-eight percent of eligible families enrolled in the digital program. Physicians spent 5 minutes or less introducing the digital platform in 83% of visits and dietitians spent 10 minutes or less in 74% of visits.
Regarding satisfaction, 88% of families reported being satisfied or very satisfied with the digital platform, physicians reported being satisfied or very satisfied with 90% of their patients and dietitians reported being satisfied or very satisfied with 81% of their patients.
According to Opipari-Arrigan, if researchers were able to support families in getting through session one of the digital program they were more likely to stick with the program until the end.
“We found that [the digital platform] offers an early approach to struggles with growth and nutrition and mealtime behavior problems in children with cystic fibrosis using everyday food rather than supplements to increase calories and weight gain,” Opipari-Arrigan said.
The evidence from this trial supports developing and conducting a dissemination trial to improve nutrition and growth in children with cystic fibrosis, Opipari-Arrigan said.