The impact of parental and child coping strategies on disease outcomes and emotional well-being in children with newly diagnosed inflammatory bowel disease
Wilson, Jennifer Kelly
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BACKGROUND: Inflammatory Bowel Disease (IBD), including Crohn’s disease (CD) and ulcerative colitis (UC), are chronic inflammatory conditions of the bowel that display a rising prevalence in childhood and adolescence. The diagnosis of a chronic condition, such as IBD, in childhood can be overwhelming and stressful for both the patient and caregiver. Parents and family members can play a critical role in providing emotional support for children with newly diagnosed IBD. We hypothesized that dysfunctional patient and parental coping strategies would correlate with increased anxiety and depression in children, worsening clinical disease activity, and increased healthcare utilization. OBJECTIVE: The primary objective of the IBD Coping Study is to assess the stability of coping strategies and psychological stress over the first year following a new diagnosis of IBD. Secondarily, we aim to assess the impact of child and parental coping strategies on disease activity and emotional well-being over the year. METHODS: This is a prospective, longitudinal cohort study of children with newly diagnosed IBD and their parents at Boston Children's Hospital (BCH). Patients between the ages of 9 and 17 years old that have been diagnosed with CD, UC or Indeterminate colitis (IC) within the last 6 months, are English-speaking, and receive routine care at BCH are approached for participation in our study. Participation includes the completion of previously validated psychological metrics for both child and parent at baseline and then again 12 months later. Our instruments include the Children's Depression Inventory (CDI), the Screen for Child Anxiety Related Disorders (SCARED), the IMPACT-III Questionnaire, the Patient Health Questionnaire (PHQ-9), Healthcare Utilization Survey, Pediatric Inventory for Parents (PIP), and the Hospital Anxiety and Depression Scale (HADS). RESULTS: We screened 187 patients with IBD for participation in our study, and roughly 30% of them were eligible for recruitment. To date, we have enrolled a total of 30 patients. Of these patients, there was an equal distribution of male and female participants. The majority of patients were around 14 years of age at the time of IBD diagnosis with a greater number of patients with CD (17) currently represented. We are approaching patients on average about 1.5 months after their initial diagnosis. The baseline average Pediatric Ulcerative Colitis Activity Index (PUCAI) score was 21.15 ± 20.53, whereas the average Pediatric Crohn's Disease Activity Index (PCDAI) score was 3.75 ± 2.50. On CDI items, teenage girls and boys reported increased raw and standardized scores (Raw: 5.83 and 4.83, respectively; Standardized: 43.67 and 44.67, respectively) than their younger counterparts for depressive behaviors, including negative mood and interpersonal problems. Pediatric patients encountered as inpatients reported an overall lower quality of life on IMPACT-III items (103.29 ± 15.11) than those approached in the ambulatory setting (140.36 ± 7.50). On SCARED items, patients met criteria for the potential presence of one or more anxiety disorders. Inpatients also reported being bothered more frequently with respect to hindrances in their sleep, appetite, and daily routines on the PHQ-9 metric. Parents of children with newly diagnosed IBD rely on increased communication with their child's primary GI provider, and their scores reflected lower emotional functioning during an admission period when compared to scores reported during regular scheduled ambulatory visits. Scores collected from the HADS screen demonstrate that 6% and 33% of parents reported a score great enough to be considered a "borderline case" for depression and anxiety measures, respectively. Primary comparisons between child health assessments and parent healthcare utilization depicted concurrent elevations in the same child-parent pair at baseline. CONCLUSION: Our initial findings suggest a clear disparity between emotional stability in children and their parents in outpatient and inpatient settings following a new IBD diagnosis. Healthcare utilization by parents may be linked to adaptive or maladaptive coping, and continuation of our study will substantiate this prediction. In looking ahead, potential interventions may require approaches stratified by age, gender, and hospital setting. Our study supports the need for further investigations into the impact of targeted interventions that promote an improvement in overall quality of life in children with IBD and their family during the first year of post-diagnosis.