Background: Prior studies have shown that parents of children with inflammatory bowel diseases (IBD) have significantly more symptoms of depression and anxiety, compared to parents with children who do not have a chronic illness (1). The aim of this study is to investigate the occurrence of symptoms of distress, including depression, anxiety, and post-traumatic stress disorder, among parents of children with IBD and associations with disease course and time from diagnosis.
Methods: We conducted a cross-sectional study with parents with children (2-17 yrs) diagnosed with IBD. There were two cohorts: 1. recently diagnosed cohort (< 6 months from diagnosis); 2. established diagnosis cohort (> 1 year from diagnosis). Parents completed surveys that included demographic information and 3 widely used measures: Patient Health Questionnaire-8 (PHQ-8), Impact of Event Scale Revised (IES-R), and Patient Reported Outcomes Measurement Information System Short Form v1.0-Anxiety 8A (PROMIS-ANX).
Results: A total of 212 parents with children with IBD agreed to participate in our project. 52 parents in the recently diagnosed cohort and 103 parents in the established diagnosis cohort completed surveys. 52% of parents in the recently diagnosed cohort had clinically elevated scores on the PROMIS-ANX measure, with no significant difference in the transformed mean scores between the recently diagnosed and established diagnosis cohorts (3.77 vs 3.74, p = 0.220). Similarly, 45% of parents in the recently diagnosed cohort had clinically elevated depression scores, with no significant difference between the mean transformed scores between the recently diagnosed and the established diagnosis cohort (1.426 vs 1.346, p = 0.266). IES-R scores were significantly higher between parents of children recently diagnosed vs. established diagnosed (2.03 vs 1.62, p = 0.017). The cohort was further divided to those diagnosed within 3 months (n = 37) and those diagnosed over 5 years (n = 41) with no statically significant difference between mean transformed PROMIS-ANX (p = 0.371) or PHQ-8 scores (p = 0.605), but a significant increase in mean IES-R scores (p = 0.0478). There was no significant difference between mean transformed parental PROMIS-ANX, PHQ-8, or IES-R scores and patient's IBD phenotypes or patient medications (p > 0.05).
Conclusion: In this cohort, we found that a majority of parents with children with IBD had clinically elevated anxiety scores with no significant decrease in mean transformed scores over time. The only measure of distress that did significantly reduce between cohorts was the mean transformed IES-R score. In conclusion, the present study suggests considerable parental distress in parents of children with IBD. Interventions to alleviate parental distress might be considered.
Copyright © 2021 by The American College of Gastroenterology.