ARFID IN PEDIATRIC IBD: A MIXED METHODS STUDY EXPLORING THE PSYCHOSOCIAL IMPACT AND LIVED EXPERIENCE OF ARFID

Abstract Avoidant/Restrictive Food Intake Disorder (ARFID) is characterized by inadequate intake due to low appetite, sensory-based avoidance, or fear of aversive consequences resulting in weight loss or growth faltering, nutrient deficiencies, supplement dependence, or psychosocial impairment. Estimated prevalence is 5.9% in adults and 4.7% in children, raising concern for nutritional and psychosocial impact. Inflammatory Bowel Disease (IBD) causes chronic GI inflammation, often prompting dietary modification to avoid symptoms. Although disordered eating was found to be elevated in youth with IBD, ARFID has not been systematically studied in pediatric IBD. Adult IBD studies report prevalence of 10–17%, underscoring the need to characterize ARFID in pediatric IBD. Building on our prior work identifying ARFID symptom prevalence in youth with IBD, we conducted a mixed-methods study in this cohort to (1) examine associations with psychological functioning and (2) explore lived experiences of affected youth reporting ARFID symptoms. Phase 1 was a cross-sectional study of patients with IBD (8–25 yrs) using validated instruments (EDY-Q; NIAS+EDE-Q) to screen for ARFID symptoms and psychosocial function (PROMIS Anxiety, Depressive Symptoms, and Global Health). Associations between ARFID symptoms and participant clinical/psychosocial variables were assessed using regression models. Phase 2 involved semi-structured interviews with a purposive subsample screening positive for ARFID, exploring food-related experiences and psychosocial context. Data were analyzed thematically. Phase 1 included 100 participants (50% female; 63% White; 61% Crohn’s disease). ARFID symptoms were identified in 28% and were significantly associated with lower PROMIS Global Health T-scores (adjusted difference -4.6, 95% CI: -8.4 to -0.75, p < 0.05), indicating poorer overall health. Phase 2 included five youth (ages 11–18; 60% male, 60% Crohn’s disease). Themes revealed sensory aversions, fear of symptom exacerbation, and protective eating behaviors reinforcing avoidance and mealtime anxiety. Youth described social withdrawal and feelings of difference, reflecting psychosocial burden. Family dynamics shaped eating behaviors, sometimes buffering and/or intensifying distress. Youth reported strategies such as carrying “safe” foods and adjusting meal timing, demonstrating both resilience and the effort required to manage ARFID within IBD. This mixed-methods study demonstrates the psychosocial burden of ARFID symptoms in youth with IBD and the need for early identification and more support. Routine ARFID screening may facilitate timely referrals to nutritional, psychological, and behavioral support. Interventions should target mealtime anxiety, sensory triggers, and family involvement while promoting adaptive eating behaviors to improve quality of life.