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Quality of life in children with Crohn's disease: a pilot study
A K Akobeng1, M V Suresh-Babu, D Firth
1Booth Hall Children's Hospital, Blackley, Manchester, United Kingdom.
Insights
Crohn's disease significantly impacts children's quality of life, affecting daily activities and emotional well-being. Understanding these challenges is crucial for effective pediatric inflammatory bowel disease management.
Area of Science:
- Pediatric gastroenterology
- Child psychology
- Quality of life research
Background:
- Focus groups and questionnaires explored how Crohn's disease affects children aged 8-17.
- Children initially denied impact but later expressed frustration with symptoms, treatment, and hospitalizations.
Purpose of the Study:
- To assess the health-related quality of life (HRQoL) in children with Crohn's disease.
- To identify specific areas of life impacted by the condition and its management.
Main Methods:
- Utilized focus groups with children and an 88-item questionnaire for 16 pediatric patients.
- Questionnaire covered symptoms, treatment, social, emotional, family, educational, and future aspects of HRQoL.
Main Results:
- Elemental diet preferred, but surgery more effective for symptom control.
- Steroid use correlated with depressive symptoms; school absenteeism and activity limitations were common.
- Children experienced worry, anger, frustration, and social difficulties (holidays, friends' visits).
Conclusions:
- Crohn's disease is symptomatically disabling and significantly impacts children's HRQoL.
- Future pediatric inflammatory bowel disease research must evaluate treatment impact on HRQoL.
Background:
Focus group meetings were held with two groups, each containing 12 children with Crohn's disease aged 8 to 12 and 12 to 17 years. The children were asked broad questions about how Crohn's disease and its treatment affected their lives. To explore these areas in more detail, an 88-item questionnaire was developed and read to an additional 16 of 20 children with Crohn's disease selected at random from outpatients. At first, many of the children denied that Crohn's disease affected their lives at all, but it soon became apparent that many were frustrated or angry about physical symptoms, lack of understanding about Crohn's disease, unpleasant investigations, treatment, and hospitalisation.
Methods:
The questionnaire covered six domains of health-related quality of life including symptoms and treatment, social, emotional, family, educational, and future aspects.
Results:
Elemental diet was the preferred treatment, although surgery was more effective in controlling symptoms. Children receiving steroids had more depressive symptoms. Absenteeism from school and inability to engage in school sports, swimming, and running were frequent problems. There were also difficulties with taking holidays and staying at friends' houses. Worry was reported in 14 of 16 children, anger and frustration and feeling fed up in 12 of 16.
Conclusions:
In addition to being a symptomatically disabling condition, Crohn's disease has a great impact on the health-related quality of life of affected children. Future studies of treatment in children with inflammatory bowel disease should include an attempt to assess the impact on the child's health-related quality of life.