COSMIN database

Quality of life in paediatric gastrointestinal and liver disease: a systematic review

Maity, S. and Thomas, A. G.
OBJECTIVES: To identify and appraise all studies relating to and instruments developed to measure quality of life (QOL) in children with gastrointestinal or liver diseases.

METHODS: A literature search was undertaken using MEDLINE, EMBASE, CINAHL, and PsycINFO to identify relevant articles published up to the end of 2005. These were reviewed by both authors and data were extracted using a standardised form. Articles were excluded if no attempt was made to measure QOL, they did not relate to children ages <17 years, they did not relate to gastrointestinal or liver diseases, or they were review articles. Quality of life instruments identified were rated according to proposed criteria.

RESULTS: From a total of 2379 articles identified in the initial search, a total of 2309 were excluded, leaving 70 included studies. These were assigned to the following categories: inflammatory bowel disease, n = 17; cystic fibrosis, n = 20; liver disease, n = 11; surgery, n = 15; and miscellaneous, n = 7. These studies describe the impact that these diseases have on the QOL of affected children. A total of 11 disease-specific QOL instruments and 1 generic instrument with a chronic disease module were identified, but only 5 of these fulfilled the proposed quality criteria and can be recommended for future use.

CONCLUSIONS: Chronic gastrointestinal and liver diseases can have an enormous effect on the QOL of affected individuals and their families. A number of disease-specific paediatric QOL instruments have been developed and validated. Quality of life is an important outcome that should be incorporated into clinical practice and measured when treatments are evaluated. Future research should explore how QOL can best be improved in children in whom it is severely impaired.
J Pediatr Gastroenterol Nutr
1536-4801 (Electronic)
Publication year:
Overall quality of life:
Overall quality of life
Children (0-18)
Diseases of and symptoms related to the digestive system
PRO / non-PRO:
Non-patient Reported Outcome
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
2 - Interviews
6 - Clinical rating scales
CFQ - Cystic Fibrosis Questionnaire (versions: CFQ-R; 14+ for teens; Adolescents; Child; Parent/proxy)
CFQoL - Cystic Fibrosis Quality of Life Questionnaire
DDL - Defecation Disorder List
HAQL - Hirschsprung's disease/anorectal malformation quality-of-life questionnaire
IMPACT (impact of QoL for children)
ZQLQ - Zamberlan QOL Questionaire for School Age Children after Liver Transplantation