Working with children to develop dimensions for a preference-based, generic, pediatric, health-related...

Area of Science:

• Pediatric Health Outcomes Research
• Health-Related Quality of Life Measurement
• Patient-Reported Outcomes

Background:

• Preference-based measures (PBMs) are increasingly used to assess health-related quality of life (HRQoL) and inform healthcare decision-making.
• Calculating quality-adjusted life years (QALYs) relies on PBMs, but research in pediatric populations is limited.
• A need exists for a generic, pediatric PBM to capture children's perspectives on their health.

Purpose of the Study:

• To initiate the development of a new, generic, pediatric PBM of HRQoL.
• To explore how health impacts children's lives through qualitative interviews.
• To identify core dimensions of HRQoL relevant to children.

Main Methods:

• Conducted 74 qualitative interviews with children across diverse health conditions.
• Employed purposive sampling, prioritizing health status and age, with gender and ethnicity as secondary criteria.
• Analyzed interview data to identify key dimensions of HRQoL from children's perspectives.

Main Results:

• Children successfully articulated the impact of health on their lives.
• Eleven dimensions of HRQoL were identified, encompassing social, emotional, and physical aspects.
• Identified dimensions included 'feeling jealous' and 'feeling tired/weak', differentiating from existing measures that omit parental, family, or behavioral issues.

Conclusions:

• This study represents the foundational stage for a novel pediatric HRQoL PBM.
• The identified dimensions provide a basis for a child-centric measure of health-related quality of life.
• Future research should build upon these findings to develop and validate the proposed pediatric PBM.