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

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.