Developing condition-specific measures of functional status and well-being for children

Area of Science:

• Pediatric Health
• Clinical Assessment Tools
• Chronic Condition Management

Background:

• Children with chronic conditions require tailored assessments of their functional status and well-being.
• Existing measures may not adequately capture the multifaceted impact of chronic illnesses on children and their families.

Purpose of the Study:

• To describe the development of condition-specific measures for children with chronic conditions, using an asthma measure as a template.
• To detail the processes of content drafting, refinement, and pilot testing for a pediatric asthma functional status measure.

Main Methods:

• Development involved literature review and focus groups with parents and physicians to define domains and items.
• The asthma measure includes subscales for physical and social activity, emotional impact, and healthcare utilization.
• Pilot testing involved cognitive interviews and administration to 95 parents of children with varying asthma severity.

Main Results:

• Five of seven subscales demonstrated acceptable internal consistency reliability (coefficient alpha).
• Construct validity was supported by significant score differences between children with mild versus moderate-to-severe asthma.
• The measure addresses key domains impacting children with asthma and their families.

Conclusions:

• The developed asthma measure shows promising reliability and validity for assessing functional status in pediatric patients.
• This methodology provides a template for creating similar condition-specific measures for other chronic pediatric conditions.
• The tool aids in a comprehensive evaluation of children's health and well-being beyond clinical symptoms.