PubMed Health⌕ Search

Biomedical subjects

A K Akobeng

Publications and source records attributed to A K Akobeng.

25 records · Page 2Linked to original sources
PubMed1999

Quality of life in children with Crohn's disease: a pilot study.

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.

Adolescent↗
PubMed1999

Quality of life of parents and siblings of children with inflammatory bowel disease.

BACKGROUND: Few investigators have reported on the quality of life of family members of children with inflammatory bowel disease. Psychological symptoms have been reported in parents and siblings, but the problems that which give rise to these symptoms are seldom examined. In this pilot study, some of the issues that affect the quality of life of parents and siblings of children with inflammatory bowel disease were examined. METHODS: Focus group meetings were held separately with 20 parents and 7 siblings of children with inflammatory bowel disease. The participants were encouraged to identify voluntarily problems related to the disease that affected their lives, and the discussions were tape recorded. Each participant subsequently wrote down the three most important concerns. RESULTS: Thirteen (65%) parents were very concerned about the effect of the disease on the child's future jobs, marriage, independence) and 11 (55%) were worried about problems the ill child was encountering at school. Other issues of most concern to parents included side effects of medication (n = 7), limited job prospects (n = 3), persistent feelings of guilt (n = 3), and restricted family lifestyle (n = 1 ). Most siblings (57%) were concerned about their parents' keeping information about the illness from them, and three (43%) of them were also concerned about others bullying the ill child at school. Other issues of concern to siblings included fear about the disease and treatment (n = 3), parents overprotecting the ill child, and feelings of jealousy (n = 1). CONCLUSION: Families of children with inflammatory bowel disease experience many problems that may affect their quality of life. Resources should be made available to help families with these concerns.

Adolescent↗
PubMed1999

An inborn error of bile acid synthesis (3beta-hydroxy-delta5-C27-steroid dehydrogenase deficiency) presenting as malabsorption leading to rickets.

Deficiency of 3beta-hydroxy-delta5-C27-steroid dehydrogenase (3beta-HSDH), the enzyme that catalyses the second reaction in the principal pathway for the synthesis of bile acids, has been reported to present with prolonged neonatal jaundice with the biopsy features of neonatal hepatitis. It has also been shown to present between the ages of 4 and 46 months with jaundice, hepatosplenomegaly, and steatorrhoea (a clinical picture resembling progressive familial intrahepatic cholestasis). This paper reports two children with 3beta-HSDH deficiency who developed rickets during infancy and did not develop clinically evident liver disease until the age of 3 years. Bile acid replacement resulted in considerable clinical and biochemical improvement. The importance of thorough investigation of fat soluble vitamin deficiencies in infancy is emphasised.

3-Hydroxysteroid Dehydrogenases↗