The quality of life and health utility burden of recurrent respiratory papillomatosis in children

Abstract

OBJECTIVE In this study we 1) measured the impact of juvenile-onset recurrent respiratory papillomatosis on health-related quality of life, voice-related quality of life, and family psychosocial well-being; and 2) compared these different measures, exploring their intercorrelation and their correlation with clinical disease severity. STUDY DESIGN Cross-sectional qualitative study. SETTING Tertiary academic pediatric hospital. SUBJECTS AND METHODS Twenty consecutive children with active juvenile-onset recurrent respiratory papillomatosis (JoRRP) were included. Standardized interviews were performed on parents and children with the use of four validated tools: the Health Utilities Index version 3; the Pediatric Voice-Related Quality of Life survey; the Impact on Family Scale; and a visual analogue health preference measure. Clinical disease severity and demographic data also were collected. RESULTS Subjects (13 male, 7 female) had a median age of 9.2 years, median age of JoRRP onset of 3.8 years, and averaged four procedures per year of disease. Mean health utility was 0.76 (95% confidence interval 0.68–0.84) on a scale of 0 (death) to 1 (perfect health). Marked impact on voice-related quality of life and family psychosocial health also was identified. Health burden correlated poorly with existing methods of severity scoring. CONCLUSION This is the first study to use validated measures of health utility, voice-related quality of life, and psychosocial impact. This information has public health implications, providing essential parameters for accurate modeling studies and cost-utility analysis of future interventions, including different human papilloma virus vaccination strategies.