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Developing condition-specific measures of functional status and well-being for children
1American Academy of Pediatrics, Elk Grove Village, IL 60009, USA.
Insights
The American Academy of Pediatrics developed a new asthma measure to assess children's functional status. This tool helps evaluate the well-being of pediatric patients with chronic conditions.
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.
Abstract:
This paper describes the American Academy of Pediatrics' program to develop several condition-specific measures to assess the functional status and well-being of children with chronic conditions. The development of a measure for children between 5 and 12 years of age with asthma serves as a template for the development of measures for other conditions and is the focus of this paper. The processes followed in the drafting of content, refinement, and pilot testing of the measure are discussed in this paper. The domains addressed in the asthma measure include physical symptoms; the child's physical activity; the child's social activity; the family's social activity; the emotional impact on the child; the emotional impact on the family; and health care utilization. Each domain is represented by a subscale in the measure. Content for individual items within subscales was established by conducting focus groups with parents and physicians and by reviewing the literature. The measure was tested through an in-depth cognitive interview process and pilot tested by administering the measure to 95 parents of children with mild, moderate, and severe asthma. Five of the seven subscales had acceptable internal consistency reliability as measured by coefficient alpha. Construct validity was shown for some scales by significantly different scores for children with mildly versus moderately severe asthma.