Gastrointestinal symptoms and association to food items in children with hirschsprung disease: a multinational patient-reported outcome study from Latin America and Spain.

purposeChildren with Hirschsprung disease (HD) frequently experience persistent bowel dysfunction after definitive surgery. Although many families report that diet influences gastrointestinal symptoms, evidence guiding dietary management remains limited. This study evaluated dietary habits, food-related gastrointestinal symptoms, and bowel function in children with HD across Spain and Latin America.

methodsA Spanish-language version of the OASIS Nutrition Questionnaire was developed by the multinational Holistic Care in Hirschsprung Disease Network and distributed through patient associations and social media. Children aged 6 months to 18 years with HD and their caregivers completed an anonymous online survey addressing demographics, disease characteristics, dietary habits, bowel function, and perceived food-related gastrointestinal symptoms. Functional outcomes were assessed using the Rintala Bowel Function Score in toilet-trained participants without an enterostomy.

resultsA total of 108 responses from 11 Spanish-speaking countries were analysed. Disease extent included short-segment HD (39%), long-segment HD (36%), total colonic aganglionosis (16%), and small-bowel involvement (6.5%). Most participants (70%) followed a regular omnivorous diet.13% of participants used probiotics. Whereas 72% reported dietary exclusions and 66% had modified eating habits because of HD. Eating behaviors were affected in 66%, and 80% identified specific food items that worsened gastrointestinal symptoms. High-sugar foods (21%), dairy products (20%), pulses (12%), and fruits (10%) were the most frequently reported food items associated with adverse symptoms. The most common reported symptoms were soiling (51%) and abdominal bloating (29%). Patients with total colonic aganglionosis or small-bowel involvement reported more dietary gastrointestinal symptoms and the highest number of food-related symptoms.

conclusionThis first multinational Spanish speaking cohort survey demonstrates an association between food items and gastrointestinal symptoms in children with HD. Diet-related gastrointestinal symptoms are common in children with HD and increase with disease extent. Most families identified food items causing symptoms themselves. These findings highlight the need for individualized nutritional counselling as part of multidisciplinary long-term follow-up. Soiling was the main reported symptom in this Hispanic/Latino cohort. These findings emphasize the need for individualized dietary guidance supported by dietitian advice to support bowel function, growth, and quality of life, while preventing nutritional deficiencies.