BACKGROUND: Chronic illness in children is highly disruptive to both the affected child and their parent(s). Recent literature largely supports the impact of psychosocial factors on the onset and progression of IBD. Our study aims to investigate how psychosocial factors involved in parental and child coping, such as anxiety or depression, may predict the clinical and psychological outcomes of children with newly diagnosed IBD.
METHODS: We recruited and administered questionnaires to parents and children (aged 9-17) with newly diagnosed IBD. Questionnaires were administered at enrollment and at follow-up visits about one year later. The children completed four questionnaires, including IMPACT-III (measure for quality of life), SCARED (screens for anxiety), and CDI and PHQ-9 (screens for depression). The parents completed three questionnaires, including HADS (screens for anxiety and depression), PIP (assesses the burden of parental stress related to caring for an ill child), and a healthcare utilization survey (quantifies the need for medical support). Clinical data were extracted from the Boston Children’s Hospital’s electronic medical records to assess clinical outcomes.
RESULTS: We recruited a total of 86 parent/child pairs. Of the 31% of children screening positive for anxiety, 61% had parents that also screened positive for anxiety (p = 0.007). However, the same relationship was not observed for depressed children and their parents. Children with anxious parents reported a significantly worse quality of life than children with non-anxious parents (119.61 vs. 137.33; p < 0.001). Although the same mean differences were not observed for children with depressed parents, there was an association between parents that scored higher for depression and children who scored lower for quality of life (r = -0.287; p < 0.010). Quality of life scores were significantly lower in children above 12 years old than in children under 12 years old (126.6 vs 137.67; p = 0.021). Furthermore, children with worse disease severity (assessed by PUCAI or PCDAI scores) also reported worse quality of life. No significant associations were observed between disease severity and parental anxiety/depression or between disease severity and child anxiety/depression. Greater healthcare utilization was significantly correlated with greater parental anxiety (r = 0.269; p = 0.017) and greater parental depression scores (r = 0.324; p = 0.004). Over a one-year period, paired survey data revealed decreased parental stress, healthcare utilization, and child anxiety. There were no significant differences in parental anxiety, parental depression, or child depression, while a significant improvement was observed in child quality of life over a one-year period.
CONCLUSIONS: Greater parental anxiety, depression, and stress correlated with worse quality of life in children with newly diagnosed IBD. Similarly, higher anxiety and depression scores in children were associated with decreased quality of life. Interestingly, this association was not seen for disease severity. While this may indicate a stronger relationship with parent and child coping and a child’s behavioral outcomes rather than the child’s clinical outcome, additional studies are needed, as the PUCAI and PCDAI scores for disease severity were the only measurements for clinical outcomes. In addition, while we identified significant findings at one year, the study sample size for those who completed follow-up was relatively small. Larger studies are necessary to further investigate the longitudinal outcomes of coping in pediatric IBD. Overall, our data supports a more holistic approach to addressing the behavioral, emotional, and physical needs of both parents and children with newly diagnosed pediatric IBD.
| Identifer | oai:union.ndltd.org:bu.edu/oai:open.bu.edu:2144/48271 |
| Date | 28 February 2024 |
| Creators | Iqbal, Iman S. |
| Contributors | Trinkaus-Randall, Vickery, Rufo, Paul |
| Source Sets | Boston University |
| Language | en_US |
| Detected Language | English |
| Type | Thesis/Dissertation |
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