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Quality of life issues in pediatric immune-mediated inflammatory disease
Ciarán M Duffy1, George A Wells, Anthony S Russell
1Department of Pediatrics, Children's Hospital of Eastern Ontario, University of Ottawa, 401 Smyth Road, Ottawa, Ontario, Canada. cduffy@cheo.on.ca
Insights
Children with chronic inflammatory diseases like inflammatory bowel disease (IBD) and juvenile idiopathic arthritis (JIA) have lower health-related quality of life (HRQOL). This review covers tools used to measure HRQOL in these pediatric conditions.
Area of Science:
- Pediatric Rheumatology
- Pediatric Gastroenterology
- Health Outcomes Research
Background:
- Children with chronic inflammatory diseases, including inflammatory bowel disease (IBD) and juvenile idiopathic arthritis (JIA), experience diminished health-related quality of life (HRQOL) compared to healthy children.
- Significant advancements in developing functional and HRQOL measures for pediatric IBD and JIA have occurred over the last two decades.
- Canadian research teams have been instrumental in developing and validating key HRQOL instruments for immune-mediated inflammatory diseases (IMID) in children, such as the Juvenile Arthritis Quality of Life Questionnaire (JAQQ) and the IMPACT questionnaire for pediatric IBD.
Purpose of the Study:
- To review disease-specific and generic instruments for assessing quality of life (QOL) in children with IBD or JIA.
- To provide an overview of findings from outcomes studies that utilized these QOL assessment tools in pediatric populations with IBD and JIA.
Main Methods:
- Literature review of established and validated instruments for measuring HRQOL in pediatric IBD and JIA.
- Synthesis of findings from outcomes studies applying these instruments to assess HRQOL in children and adolescents with these chronic conditions.
Main Results:
- Several disease-specific and generic QOL assessment tools are available for pediatric IBD and JIA.
- Studies applying these tools reveal insights into the HRQOL of children and adolescents with these immune-mediated inflammatory diseases.
Conclusions:
- Validated instruments are crucial for accurately assessing and understanding the impact of IBD and JIA on children's quality of life.
- Continued research and application of these QOL measures are essential for improving patient care and outcomes in pediatric rheumatology and gastroenterology.
Abstract:
It has been well established that children with a chronic disease, including those with inflammatory bowel disease (IBD) and juvenile idiopathic arthritis (JIA), report lower health-related quality of life (HRQOL) as compared to their healthy peers. Over the past 20 years there has been a significant emphasis on the development of measures of function and HRQOL for application in JIA and pediatric IBD. Several of the instruments currently used to assess HRQOL in children with immune-mediated inflammatory diseases (IMID), including the Juvenile Arthritis Quality of Life Questionnaire (JAQQ) and IMPACT questionnaire for pediatric IBD, were developed and validated by Canadian-based research teams. This review describes several disease-specific and generic instruments used to assess QOL in children with IBD or JIA. It also provides an overview of findings from several outcomes studies that applied the described tools in assessing HRQOL in children and adolescents with these conditions.
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