Abstract Background The armamentarium of therapy in IBD continues to expand along with the characteristics of these therapies. Concurrently, treatment targets also continue to broaden. The study aim was to measure child and parent preferences on treatment characteristics and treatment goals in management of pediatric IBD. Methods Based on prior qualitative work (deBruyn et al. 2025; currently under review), we developed an online survey to elicit treatment preferences for IBD management among children and their parents. Children with established IBD (ages 11 to 18 years) and parents were recruited at 7 centers across Canada. The survey included a discrete-choice experiment (DCE) presenting two unlabelled treatment options that varied by (a) mode of administration (pill, infusion, injection, rectal enema or suppository), (b) chance of clinical remission at 1 year (20%, 60%, 80%), and (c) chance of endoscopic remission at 1 year (20%, 30%, 60%). A best-worst scaling (BWS) exercise was included to rank 7 treatment goals (symptom improvement, normal blood biomarkers, normal stool biomarkers, endoscopic healing, histologic healing, transmural healing, return to normal life). Preliminary data of the pilot testing were collected and analyzed separately for children and parents using multinomial logit models (for the DCE) and count analyses (for the BWS) with planned analysis of the full sample (124 children and 268 parents) to come. Results A total of 82 respondents were included in the preliminary analyses (51 children 62% Crohn’s disease, 62% female; 31 parents 90% without personal history of IBD). Overall, children and parents showed similar treatment preferences in the DCE as well as BWS treatment goal rankings. Children and parents preferred 80% chances of clinical remission and 60% chances of endoscopic remission over 20% chances of clinical and endoscopic remission. Children preferred oral treatments while parents preferred infusions and injections over rectal treatments. Return to normal life and symptom improvement were ranked as the most important treatment goals, while the least important treatment goal was histologic healing. Endoscopic, transmural and histologic healing were the least important aspects for parents whereas only endoscopic and histologic healing were ranked as least important treatment goals for children. Conclusion Our preliminary analysis of pilot data reveals that preferences for treatment characteristics and goals were similar between children and parents. However children valued an oral treatment and transmural healing more highly than parents. Our planned full analysis yields the potential to enhance shared decision-making and guide development of knowledge translation tools to improve outcomes. Reference: deBruyn, J. C., Hart, L., MacKean, G., Staples, N., Lee, A., MacDonald, K. V., under review]. Crohn’s & Colitis 360. Conflict of interest: Dr. Debruyn, Jennifer: Personal Fees for Consulting: Abbvie, Pfizer Personal Fees for travel support for meetings: Organon Oedingen, Carina: No conflict of interest Pai, Nikhil: Received research materials from Rebyota. Otley, Anthony: Research grants - Abbvie Marshall, Deborah: Svare Chair in Health Economics, Value and Impact Non-financial support from Illumina, ISPOR for meeting travel expenses. Personal fees for DCE consultation from Novartis, Analytica and Office for Health Economics.
Debruyn et al. (2026) studied this question.