Parental perspectives on pediatric inflammatory bowel disease: Unraveling concerns, and study participation willingness

ObjectivesThe impact of disease burden extends beyond pediatric inflammatory bowel disease (IBD) patients to include their parents. Previous studies, predating the biologic era, have highlighted parental concerns about potential side effects associated with IBD medications. However, there is a notable gap in the literature regarding parents' perceptions of clinical studies involving pediatric IBD patients. This study aims to explore the specific concerns troubling parents of children with IBD, identifying factors influencing these concerns, and assesses parental willingness to allow their child's participation in clinical studies.MethodsUtilizing social media, we disseminated an anonymous questionnaire to parents of pediatric IBD patients. The questionnaire encompassed queries about parental willingness for their child to partake in clinical studies, aspects of the disease deemed bothersome, and the sense of coherence scale (SOC).ResultsResponses were obtained from 101 parents, with a mean age of 46.4, of whom 82.2% were female. Concerns about potential future side effects of their child's medications surpassed worries about disease symptoms (80.04% vs. 73.47%). Linear regression analysis revealed that parents with lower SOC scores, limited medical care accessibility, and a higher age of the child at diagnosis, exhibited heightened concerns about the future impact of the disease on their child (p = 0.016, 0.003, and 0.045, respectively). While a majority rejected participation in studies involving new medications (54.5%), there was greater agreement for studies on nutritional therapies (84.2%) and complementary medicine (91.1%). Classification tree analysis indicated that women were more inclined to permit their child's participation in studies focusing on complementary medicine (adjusted p = 0.002).ConclusionParents of IBD patients express greater apprehension about potential side effects from IBD medications and display reluctance toward their child participating in clinical studies related to medications. What is Known Parents of children with inflammatory bowel disease (IBD) often grapple with apprehensions related to their children's illness and potential side effects stemming from prescribed medications. While the practice of involving adult IBD patients in treatment decision-making and research initiatives has demonstrated efficacy, the application of such strategies in the realm of pediatric patients and their parents is not as extensively exploredWhat is New The study demonstrated that parents exhibit a heightened level of concern regarding prospective adverse effects of their child's medications, surpassing anxieties pertaining to the manifestation of disease symptoms. Studies examining complementary medicine in IBD observe a notably elevated rate of participation, whereas investigations focused on novel medications register the lowest response rate.