The relationship between parent and child coping in pediatric and young adult patients with newly diagnosed inflammatory bowel disease
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Abstract
BACKGROUND: Pediatric patients with Inflammatory Bowel Disease (IBD) endure significant stress from disease symptoms, treatment side effects, and psychological comorbidities. Additionally, their parents shoulder a substantial burden from managing their child’s healthcare. However, investigations exploring the relationship between parent and child coping in the context of IBD have been sparse. Our study aims to assess this relationship between parental coping and child coping in newly diagnosed IBD by determining the relationship between parent and child psychological well-being on a child’s quality of life and healthcare utilization. METHODS: Pairs of parent and child (age 9-17) with newly diagnosed IBD were recruited at Boston Children’s Hospital (BCH). We administered a series of questionnaires at baseline (within the first six months of diagnosis) and at follow-up 12-36 months later. Participating children completed assessments of quality of life (IMPACT-III), anxiety (SCARED), and depression (CDI & PHQ-9). Their parents completed a validated assessment of parental stress (PIP), parental anxiety/depression (HADS), and a Healthcare Utilization survey. We abstracted demographic information and IBD-specific measures from their BCH medical records for clinical outcome assessment. RESULTS: There were a total of 86 participating parent and child pairs. Follow-up data was successfully obtained from 35 parent and child pairs. Overall, we observed improvement over time in the child’s quality of life (p<0.001), a decrease in child anxiety (p<0.05) and parental stress, and no change in parental anxiety and depression. Although child depression decreased over the year since diagnosis using CDI scores (p<0.05), a different depression screen, PHQ-9, did not indicate any differences. There was also a significant (p<0.001) decrease in healthcare utilization (7.46 ± 5.77 to 1.75 ± 1.84). Children with parental anxiety had a significantly lower quality of life (118.23 vs 136.85; p<0.001) at baseline, although those differences disappeared at follow-up. There was a moderate negative correlation (r= -0.512, p<0.001) between parental anxiety and child quality of life only at baseline. Children with parental depression showed no differences from children without parental depression between baseline or follow-up, although a weak negative correlation with significance was observed at baseline (r= -0.300, p<0.05*). Children with parental anxiety and depression showed a significant increase in healthcare utilization at baseline but not during follow-up (Anxiety: 7.34 vs 1.55, depression: 8.20 vs 1.00). There appears to be no correlation (p>0.05) between parental anxiety/depression and healthcare utilization. However, the relationship between parental stress and a child’s quality of life revealed a moderate negative correlation (r= -0.567, p<0.001, r= -0.481, p<0.001) at baseline, but no correlation was observed at follow-up. In the case of the relationship between parental stress and healthcare utilization, a weak positive correlation with significance (r= 0.328, p<0.01) was only observed at baseline for parental stress (frequency). Still, no correlation was observed for parental stress (difficulty) at baseline or follow-up. Finally, there was a moderate positive correlation with significance for the relationship between parental anxiety and child anxiety (r= 0.396, p<0.001) only at baseline. Interestingly, we observed a moderate positive correlation with significance (r= 0.430, p<0.05, r= 0.429, p<0.05) between parental and child depression for only the data collected during follow-up. CONCLUSIONS: We observed improvement in the child’s quality of life, child anxiety/depression, and parental stress over the 1-3 years after a child is newly diagnosed with Inflammatory Bowel Disease. However, parental anxiety and depression did not change over time. There was a significant decrease in healthcare utilization over time as well. Further, high parental anxiety, depression, and stress all correlated with lower quality of life in the child and increased healthcare utilization at time of diagnosis. However, no difference between children with and without parental anxiety, depression, and stress was observed at follow-up. Further, high parental anxiety correlated with high child anxiety, but no correlation between parental and child depression was found. Interestingly, high parental depression impacted child depression only at follow-up. The improvement in the child’s quality of life, disease outcome, and psychological well-being over the year since diagnosis is reassuring. This underscores the importance of identifying high-risk and high-need families within the first six months of diagnosis to ensure they receive the necessary support. By offering assistance to these families, we can also alleviate the burden on healthcare providers and enhance hospital efficiency.
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2024