Parental Distress in Pediatric Inflammatory Bowel Diseases: Associations With Time From Diagnosis, Disease Activity, and Demographic Factors

BACKGROUND: There are limited studies examining caregiver distress when raising a child with inflammatory bowel disease (IBD). The aim of this study was to investigate the occurrence of symptoms of distress (anxiety, depression, and post-traumatic stress disorder [PTSD]) among parents with children with IBD and associations with disease severity, time from diagnosis, and demographic factors. METHODS: We conducted a cross-sectional study with parents of children (2–17 years) diagnosed with IBD. There were 2 cohorts: (1) recently diagnosed cohort (<6 months from diagnosis); (2) established diagnosis cohort (>1 year from diagnosis). Parents completed measures of anxiety, depression, and PTSD, while children completed surveys on the symptoms of their IBD. RESULTS: Fifty-two parents in the recently diagnosed cohort and 103 parents in the established diagnosis cohort completed surveys. For the entire cohort of parents, we found the mean scores on all measures of distress were within the normal ranges with 20%, 13%, and 8% of parents reporting moderate-to-severe symptoms of anxiety, depression, and PTSD, respectively. Symptoms of anxiety and depression were not significantly associated with time from diagnosis; symptoms of anxiety and PTSD were significantly associated with patients’ IBD clinical activity. CONCLUSIONS: Parents with children with IBD are remarkably resilient to distress even soon after their child’s diagnosis. Despite considerable resilience, routine brief caregiver screening for symptoms of anxiety during annual visits seems reasonable and feasible.