Quality of Life in Children with Crohn's Disease

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.

Impact of Inflammatory Bowel Disease on Health-Related Quality of Life

“…Rabbett the need to rationalize medical resources the use of questionnaires will become more widely used. Which type of et al [99] assessed the HRQOL of parents of 16 children with CD observing that the main parental concerns were questionnaire to apply remains an unresolved question because there is no gold standard to use as reference. In issues concerning side effects of medications and the children's future.…”

“…In issues concerning side effects of medications and the children's future. Almost half of the parents studied [99] clinical practice we would recommend the use of a specific questionnaire because it facilitates follow-up of HRQOL cited disruption of work and holidays. These studies suggest that pediatric and adolescent IBD has substantial changes over time.…”

Inflammatory Bowel Disease in Children: Psychological and Psychiatric Issues

“…Significant social and psychological problems have been described in these patients, such as absenteeism from school, stress related to bullying, decreased ability to engage in sports and other pursuits (eg, traveling), worries regarding medication side effects, and major disruption of family patterns [25,26]. Understanding and coping with the physical challenges of IBD was found to be particularly difficult for children and adolescents with IBD, who reported reduced health-related quality of life relative to their physically healthy peers [26,27]. They also had poor social competence scores [17] and low self-esteem [20,28].…”

“…Parents of IBD patients reported being concerned about bullying, long-distance trips (because of lack of access to toilets), and the effects of the disease on their child's future jobs and possible marriage [26].…”

Coping skills for reducing pain and somatic symptoms in adolescents with IBD

“…3 Some disease-related factors have been found to be associated with poor emotional functioning, including pain, 4 elevated stress levels, 5 and impairments in physical functioning. 6,7 In fact, nearly half of children and adolescents with IBD report functional limitations in daily activities due to IBD, such as missing school or social events. 6 Given the associations between psychosocial stressors and physical functioning, 8 it is possible that improving psychosocial functioning can have a positive effect on physical outcomes, such as pain.…”