Child and parent perspectives in IBD management: a literature review and qualitative study

Abstract Background The therapeutic landscape and treatment goals for pediatric inflammatory bowel disease (IBD) continue to evolve. However, there remains a paucity of literature capturing the experiences and preferences of children with IBD and their parents on IBD management. Methods We conducted a literature review and qualitative study to describe perspectives and preferences of children with IBD and their parents regarding IBD treatment, treatment goals, and decision-making in IBD management. Articles were identified in MEDLINE and key study characteristics and findings were summarized to inform qualitative interviews. Children with IBD (11-18 years of age) and their parents were recruited through purposive sampling from a gastroenterology clinic for semi-structured telephone interviews until code saturation was reached in thematic analysis. Results In the literature review, 207 records were identified with nine studies ultimately included. Important aspects of IBD treatment included treatment efficacy, symptomatic improvements, and associated risks and side effects. Parents of children with IBD were concerned about the risks and preferred treatments with fewer long-term adverse effects; adolescents with IBD focused on immediate quality-of-life and short-term benefits. Ten parents and nine children with IBD (2.7-7.9 years disease duration) participated in interviews. Five major themes emerged: (1) overall impact of IBD and its management; (2) IBD treatment goals; (3) considerations for IBD management decisions on treatment; (4) considerations for IBD management decision on testing; and (5) shared decision-making. Conclusions Our findings highlight how children and parents contextualize the importance of IBD management within their lives, and draw attention to the need for personalized, patient-centered care and meaningful shared decision-making.