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Quality of life in paediatric gastrointestinal and liver disease: a systematic review
Santanu Maity1, Adrian G Thomas
1Royal Liverpool Childrens NHS Trust, Liverpool, UK.
Insights
This review identified 70 studies on quality of life (QOL) in children with gastrointestinal or liver diseases. Only 5 of 11 developed QOL instruments met quality criteria for clinical use.
Area of Science:
- Pediatric Gastroenterology and Hepatology
- Health Outcomes Research
- Quality of Life Assessment
Background:
- Chronic gastrointestinal and liver diseases significantly impact children's quality of life (QOL).
- Existing literature on QOL in pediatric populations with these conditions requires systematic appraisal.
- Development of reliable instruments is crucial for measuring QOL in affected children.
Purpose of the Study:
- To identify and critically evaluate studies measuring quality of life (QOL) in children (<17 years) with gastrointestinal or liver diseases.
- To appraise the quality of developed instruments for assessing QOL in this pediatric cohort.
- To determine which QOL instruments are suitable for clinical application and future research.
Main Methods:
- Comprehensive literature search across MEDLINE, EMBASE, CINAHL, and PsycINFO up to December 2005.
- Systematic review and data extraction by two independent reviewers using a standardized form.
- Exclusion of studies not measuring QOL, not involving children, or not related to gastrointestinal/liver diseases; exclusion of review articles.
- Quality appraisal of identified QOL instruments based on predefined criteria.
Main Results:
- 70 studies were included, focusing on inflammatory bowel disease (17), cystic fibrosis (20), liver disease (11), surgery (15), and miscellaneous conditions (7).
- 11 disease-specific and 1 generic QOL instrument with a chronic disease module were identified.
- Only 5 instruments met the quality criteria and are recommended for future use.
Conclusions:
- Chronic gastrointestinal and liver diseases profoundly affect the quality of life for children and their families.
- Validated, disease-specific pediatric QOL instruments exist, but rigorous quality assessment is necessary.
- Quality of life should be a standard outcome measure in clinical practice and treatment evaluation for pediatric gastrointestinal and liver diseases.
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.
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