Assessing the impact of a diverting ostomy on the quality of life, emotional health, and psychosocial functioning in children with IBD and their families
Embargo Date
2028-02-11
OA Version
Citation
Abstract
BACKGROUND: Inflammatory Bowel Disease (IBD) is an overarching term for multiple chronic conditions defined by inflammation of the gastrointestinal tract. These are typically diagnosed in young adulthood or adolescence, with an increasing incidence rate in pediatric populations. In cases of severe IBD that are not well managed with initial treatments, surgical therapy may be indicated to pursue placement of temporary or permanent ostomy. Undergoing ostomy procedures greatly impact patients with IBD and their families financially and affect their quality of life, self-esteem, and day-to-day interactions. Our study aims to assess the impacts of a diverting ostomy on the quality of life, emotional health, and psychosocial functioning of pediatric patients with IBD and their families. Parent and family HRQOL describes the addition of caregiving tasks that come with managing chronic IBD. Psychosocial functioning refers to patients and their parents’ levels of anxiety or depression. METHODS: Pediatric patients with diagnosed IBD who are scheduled to undergo a diverting ileostomy or colostomy were recruited alongside their parents from Boston Children’s Hospital (BCH). Multiple questionnaires were administered to both patient and their parents at baseline and two subsequent follow-ups at 2-3 months post-operation and 9-12 months post-operation. Participating children completed questionnaires regarding health-related quality of life (IMPACT), anxiety (SCARED), depression (PHQ-9), and other psychosocial functioning (FDI and OAS-23). Participating parents then completed additional questionnaires regarding parental stress and psychosocial functioning (PIP) and anxiety (GAD-7). DISCUSSION: Symptoms and treatment related to a child’s diagnosis of IBD greatly impact their quality of life, with now the added effort required for ostomy management. Providing in-depth training and mentoring on ostomy management can increase patients' knowledge and confidence. Our study hypothesizes a positive correlation between postoperative time and a child's quality of life, with a gradual improvement in QoL over time. Chronic IBD has also been associated with an increased risk of anxiety and depression. Additionally, undergoing extensive surgery with multiple reported symptoms such as pouch leakage, odor, or skin irritation will have a high likelihood of impacting psychosocial functioning. Our study hypothesizes that there may be increased anxiety and depression symptoms immediately following surgery but that these will dissipate with time. Providing adequate and structured ostomy care may facilitate decreased feelings of anxiety. Our study anticipates that their child’s ostomy procedure will greatly impact parental stress. Wehypothesize that parental anxiety and depression may increase following surgery but could plateau as time increases. Similarly to parenting stress, gaining more knowledge about ostomy procedures and management may decrease parental anxiety. Additionally, this would heavily rely on their child’s psychosocial functioning about their diagnosis and ostomy procedure.
Description
2025