What is this Study About?
As medical options for IBD continue to grow, the spectrum in characteristics of medications also broadens; examples of these characteristics include mechanism of action, mode and frequency of administration, efficacy in achieving treatment targets, efficacy on other diseases, and side effects. In addition, targets in IBD management continue to advance, and now include normalization / resolution of symptoms, blood and stool biomarkers, growth, endoscopy, quality of life, and absence of disability. Given the broadening spectrum of treatment options and targets, understanding child and parent perspectives and preferences on treatment characteristics and targets in pediatric IBD is essential to guide clinicians and their patients along the process of shared decision-making.
Although numerous pediatric gastroenterology societies provide guidelines on management of pediatric IBD, unique preferences of physician / children / parents yield a variety of options and strategies. In addition, there are limited data on child and parent preferences around treatment characteristics and especially treatment goals / targets in pediatric IBD.
- To explore child and parent perspectives on treatment characteristics, goals/targets, and decision-making in IBD management;
- To describe the known perspectives and preferences of children with IBD and their parents on these topics;
- To measure child and parent preferences of the above topics.
Our study will provide an innovative, comprehensive, and multidimensional evaluation of child and parent perspectives and preferences regarding treatment characteristics and targets along with decision-making in pediatric IBD. Our study findings will provide essential knowledge to guide clinicians and empower children and parents as they partner together in the IBD management decision-making process.
Who can Participate?
Children/youth with IBD between 11 and 18 years of age, in all of Canada. Parents of children/youth with IBD between 8 and 18 years of age, in all of Canada.
Your Role in this Study
This will be a three-phase study. Phase 1 will address Objective #1 through a qualitative interview study where children with IBD between ages 11 and 18 years and their parents will be interviewed using a guide focussed on understanding perspectives on this topic. Phase 2 will address Objective #2 with a scoping review that will identify, characterize, and summarize key findings in the existing literature related to this topic as well as identify research gaps in existing literature. Phase 3 will address Objective #3 using a quantitative survey, which will include discrete-choice experiments. Phase 1 and 2 are already completed. We would appreciate Crohn's and Colitis help with promoting our study so that we can complete Phase 3.
Phase 3 is the development and distribution of a quantitative survey to measure child and parent preferences on treatment characteristics and treatment targets in the management of pediatric IBD. The qualitative work and scoping review will provide the foundation for developing the quantitative survey, including identifying attributes that will inform the discrete-choice experiments. Discrete-choice experiments are a quantitative technique for eliciting preferences from participants without directly asking them to state their preferred options. The discrete-choice experiments will present participants with a series of alternative hypothetical scenarios containing a number of attributes, each of which may have a number of levels. . Participants will state their preferred choice between several competing scenarios, each of which consists of a combination of these attributes and/or levels. The discrete-choice experiments provide information on the relative importance of each attribute. The quantitative survey will be developed using the Dynamic Computer Interactive Decision Application (DCIDA) and all data will be anonymous. The target enrolment for Phase 3 will be 300 children with IBD (ages 11-18 years) and 300 parents of children with IBD (ages 8-18 years) across Canada.
This study has been approved by The University of Calgary's Conjoint Health Research Ethics Board (REB# REB20-1332_MOD8).
University of Calgary