UNDERSTANDING CHILD AND PARENT PREFERENCES IN PEDIATRIC INFLAMMATORY BOWEL DISEASE MANAGEMENT
Author(s)
Deborah A. Marshall, PhD1, Carina Oedingen, PhD1, Nikhil Pai, PhD2, Anthony Otley, PhD3, Jennifer Debruyn, PhD1.
1University of Calgary, Calgary, AB, Canada, 2University of Pennsylvania, Pennsylvania, PA, USA, 3Dalhousie University, Halifax, ON, Canada.
1University of Calgary, Calgary, AB, Canada, 2University of Pennsylvania, Pennsylvania, PA, USA, 3Dalhousie University, Halifax, ON, Canada.
OBJECTIVES: Inflammatory bowel disease (IBD) remains a lifelong condition requiring long-term medical therapy. The aim was to elicit treatment preferences for IBD disease management among children and parents.
METHODS: Based on qualitative work, we developed an online survey containing a discrete choice experiment (DCE) and best-worst scaling (BWS) case 1. Children with established IBD of ages 11-18 years and parents were recruited at 8 centers across Canada. The DCE included three treatment attributes (mode of administration, chance of clinical and endoscopic remission at 1 year). The BWS included 7 treatment goals (return to normal life, symptom improvement, endoscopic healing, normal blood biomarkers, normal stool biomarkers, histologic healing, transmural healing). Data were analyzed separately for children and parents using multinomial logit models (DCE) and count analyses (BWS).
RESULTS: Overall, 391 respondents (124 children and 267 parents) were included. Most children had Crohn’s disease (63%) and were female (65%). Majority of parents reported no own history of IBD (90%). Overall, children and parents showed similar treatment preferences and goals. Treatment preferences were as expected, with 80% chances of clinical and 60% chances of endoscopic remission were preferred over 20% chances. Children preferred oral treatments, while parents preferred oral pills and infusions over rectal administration. Return to normal life and symptom improvement were ranked as the most important treatment goals for both. Endoscopic healing had the same BWS score for both but showed different rankings as normal blood and stool biomarkers were ranked higher by parents. The least important aspects for parents were endoscopic, transmural and histologic healing, while only histologic and transmural healing were ranked as least important treatment goals for children.
CONCLUSIONS: Our analysis reveals that both treatment and treatment goal preferences were similar between children and parents. Understanding preferences for IBD treatment will have the potential to inform clinical practice and enhance shared decision-making.
METHODS: Based on qualitative work, we developed an online survey containing a discrete choice experiment (DCE) and best-worst scaling (BWS) case 1. Children with established IBD of ages 11-18 years and parents were recruited at 8 centers across Canada. The DCE included three treatment attributes (mode of administration, chance of clinical and endoscopic remission at 1 year). The BWS included 7 treatment goals (return to normal life, symptom improvement, endoscopic healing, normal blood biomarkers, normal stool biomarkers, histologic healing, transmural healing). Data were analyzed separately for children and parents using multinomial logit models (DCE) and count analyses (BWS).
RESULTS: Overall, 391 respondents (124 children and 267 parents) were included. Most children had Crohn’s disease (63%) and were female (65%). Majority of parents reported no own history of IBD (90%). Overall, children and parents showed similar treatment preferences and goals. Treatment preferences were as expected, with 80% chances of clinical and 60% chances of endoscopic remission were preferred over 20% chances. Children preferred oral treatments, while parents preferred oral pills and infusions over rectal administration. Return to normal life and symptom improvement were ranked as the most important treatment goals for both. Endoscopic healing had the same BWS score for both but showed different rankings as normal blood and stool biomarkers were ranked higher by parents. The least important aspects for parents were endoscopic, transmural and histologic healing, while only histologic and transmural healing were ranked as least important treatment goals for children.
CONCLUSIONS: Our analysis reveals that both treatment and treatment goal preferences were similar between children and parents. Understanding preferences for IBD treatment will have the potential to inform clinical practice and enhance shared decision-making.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
PCR189
Topic
Patient-Centered Research
Topic Subcategory
Patient Engagement
Disease
Gastrointestinal Disorders, Pediatrics