Development and Validation of a Questionnaire Measuring Treatment Burden in Pediatric Asthma.

Abstract

Although treatment burden significantly affects the management of pediatric asthma, no specific instrument exists to measure it in this population. To develop and validate a questionnaire measuring treatment burden in pediatric asthma from both children's and parents' perspectives. We conducted semi-structured interviews with 20 children with asthma (aged 8-12 years) and their parents to identify relevant components of treatment burden. Items were refined through a Delphi process with pediatric pulmonologists. The questionnaire was then validated in 202 parent-child dyads across eight teaching hospitals. We assessed psychometric properties, including factorial validity, internal consistency, construct validity, and test-retest reliability. The final questionnaire was composed of seven items for children (Cronbach α = 0.78) and 13 items for parents (Cronbach α = 0.86). Both versions demonstrated strong construct validity, with significant correlations with quality of life measures (r = -0.52 for children and r = -0.53 for parents) and global impression of treatment burden (r = +0.66 for children and r = +0.77 for parents). Test-retest reliability was acceptable for both children (intraclass correlation coefficient = 0.72) and parents (intraclass correlation coefficient = 0.80). Higher treatment burden scores were associated with being female (for both children and caregivers), having multiple scheduled visits, and poor asthma control. Parent and child scores showed moderate correlation (r = 0.33; P < .01), highlighting the importance of capturing both perspectives. This validated questionnaire provides a reliable tool for measuring treatment burden in pediatric asthma, enabling clinicians to better understand and address the impact of asthma management on children and their families.