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Measuring quality of life in paediatric patients
1Institute of Health Economics, Edmonton, Alberta, Canada.
Insights
Measuring health-related quality of life (HR-QOL) in children presents unique challenges. This review examines instruments and methods for pediatric HR-QOL assessment, focusing on considerations for children and specific conditions like asthma.
Area of Science:
- Pediatric Health Outcomes Research
- Quality of Life Measurement
- Clinical Psychology
Background:
- Assessing health-related quality of life (HR-QOL) in pediatric populations requires specialized approaches due to developmental and cognitive factors.
- Existing literature on pediatric HR-QOL assessment reveals diverse instruments and methodologies.
- Challenges include children's comprehension, disease understanding, proxy reporting, and developmental changes.
Purpose of the Study:
- To review and highlight key considerations for measuring HR-QOL in children.
- To examine available instruments and approaches for pediatric HR-QOL assessment.
- To discuss condition-specific measures using asthma as an example.
Main Methods:
- Literature review of pediatric HR-QOL assessment tools.
- Identification and analysis of generic and condition-specific instruments (e.g., asthma).
- Evaluation of instruments based on domains, respondent type, age group, format, and psychometric properties (reliability, validity).
Main Results:
- Identified 15 generic and 5 asthma-specific HR-QOL instruments meeting inclusion criteria.
- Detailed key features of each instrument, including domains, respondent, age suitability, and language availability.
- Addressed study-specific issues such as patient population, sample size, reliability, and validity.
Conclusions:
- Measuring HR-QOL in pediatric patients faces significant challenges.
- Increased attention to specific pediatric considerations will advance the field.
- Improved methods will enhance the utility and application of HR-QOL measures in children.
Abstract:
The purpose of this paper is to highlight important considerations in the measurement of health-related quality of life (HR-QOL) in paediatric populations. Considerations specific to the evaluation of HR-QOL in children include children's understanding of the questions being asked, their understanding of their own disease, using parents as proxies, time perception problems and simply the fact that children are continually changing. We provide a review of the currently available literature regarding paediatric HR-QOL assessments to examine the different instruments and approaches taken to assess HR-QOL in paediatrics. Asthma-specific measures are discussed as examples of condition-specific HR-QOL instruments because of the considerable amount of methodological and developmental work that has been conducted in this disease. Our search strategy revealed 15 main generic and 5 main asthma-specific instruments that met our criteria for inclusion. The main points high-lighted for each instrument are the description of domains, respondent (i.e. the child, parent or clinician), age group, number of items, format of instrument (usually self-administered or by interview), original country and language, and the existence of translations. For the various studies in which the different instruments are used, the issues of patient population tested, sample size, reliability and validity are addressed. Although this paper does not attempt to be an exhaustive study of paediatric HR-QOL instruments, we provide an overview of the main generic and asthma-specific instruments, as well as an examination of the different methods used in assessing paediatric HR-QOL. Many challenges exist in the measurement of HR-QOL in paediatric patients. With increased attention to the considerations high-lighted, the field will continue to grow, and the usefulness and application of HR-QOL measures in paediatric patients is likely to improve.
