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Quality of life in children with Crohn's disease
H Rabbett1, A Elbadri, R Thwaites
1Booth Hall Children's Hospital, Manchester, England.
Insights
Crohn's disease significantly impacts children's quality of life, affecting education, social activities, and family well-being. Parental concerns focus on treatment side effects and future prospects for their children.
Area of Science:
- Pediatric Gastroenterology
- Quality of Life Research
- Child Psychology
Background:
- Crohn's disease is a chronic inflammatory bowel disease affecting children and adolescents.
- The impact of pediatric Crohn's disease on health-related quality of life (HRQoL) requires comprehensive assessment.
- Understanding patient and family perspectives is crucial for holistic care.
Purpose of the Study:
- To assess the health-related quality of life (HRQoL) in children (8-17 years) with Crohn's disease and their families.
- To identify specific domains of HRQoL most affected by the condition and its treatment.
- To explore parental concerns regarding their child's well-being and future.
Main Methods:
- A 10-week randomized cross-sectional study involving 16 children with Crohn's disease and their families.
- Utilized an 88-item questionnaire assessing six HRQoL domains: disease/treatment, social, emotional, family, education, and future.
- Included the Rutter A Questionnaire to assess emotional and behavioral symptoms.
Main Results:
- Crohn's disease negatively impacted education (absenteeism, distraction) and sports participation (lack of energy, stoma).
- Social challenges included difficulties with sleepovers; bullying was a greater parental concern.
- Elemental diet taste was disliked; steroids correlated with depressive symptoms. Parental concerns focused on medication side effects and future prospects.
- Parental views on symptom severity correlated significantly with children's views on specific symptoms (p < 0.01).
Conclusions:
- Pediatric Crohn's disease poses significant challenges to children's HRQoL, extending to family life.
- The study highlights the need for interventions addressing educational, social, and emotional aspects.
- The developed questionnaire is a valuable tool for assessing HRQoL in pediatric Crohn's disease populations.
Abstract:
In a 10-week randomised cross-sectional study we used an 88-item questionnaire to assess the quality of life in 16 children (ages 8-17 years) with Crohn's disease and their families. The questionnaire covered six domains of health-related quality of life, including disease and its treatment, social, emotional, family, education, and future aspects. Crohn's disease affected education, with absenteeism in 12 and distraction during school work in six. Three children had had a home tutor, and five stated their need for one. Engaging in sports was a problem for eight children, mainly because of a lack of energy in five and the presence of a stoma in three children. Three children had missed every PE lesson in 1 year. Five children cited the social problem of being unable to stay over at friends' houses. Bullying concerned parents more than the children. Holiday difficulties included long distance traveling or lack of toilet facilities during school trips. Elemental diet was the preferred treatment, although the majority complained about the taste. Surgery was the most effective method of symptom control, though the resulting stoma was upsetting and restricted sports activities. Children on steroids had more depressive symptoms. Using the Rutter A Questionnaire, five children were designated "neurotic." Parents' views of the severity of symptoms significantly correlated with their children's views regarding rectal bleeding, poor growth, lack of energy, and poor appetite (p < 0.01). The main parental concerns were the side effects of medications and issues concerning their children's future, including schooling, job prospects, and marriage. The parents of 11 children cited problems with children's behaviour. The parents of seven cited disruption of work, and those of six named taking holidays. Crohn's disease in children, in addition to being a symptomatically disabling condition, has a great impact on the health-related quality of life of both sufferers and their parents. The questionnaire was a useful instrument, and with some adjustment it can be used again in large group studies.