Communicating the benefits and risks of inflammatory bowel disease therapy to patients and families

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Purpose of reviewTreatment options for inflammatory bowel disease (IBD) have rapidly expanded as the treatment paradigm has shifted from controlling symptoms to reducing lifetime inflammatory burden. Families are confronted with the actual and perceived risks of this ever-expanding array of choices. We aim to review the shared decision-making process in pediatric IBD to ensure an optimal therapeutic plan for the child and their family.Recent findingsMucosal healing is a critical treatment target in pediatric IBD but it may not coincide with clinical symptoms. Evidence-based therapies carry important risks, some of which may be less severe than previously suspected, and a family's understanding of these risks plays a crucial role in how they make health decisions. To form an effective shared therapeutic plan, the physician must incorporate an understanding of the values of both the child and family along with their lived experience of illness.SummaryTo limit harm and promote health in pediatric IBD, the physician must communicate collaboratively with the child and their family to form mutually understood goals of care – both subjective experiential and objective biological – and appreciate actual and perceived risks of treatment options to effectively educate families and navigate toward the best treatment choices.Video abstract

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