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Use of the Pediatric Quality of Life Inventory to Assess the Health-Related Quality of Life in Children with Recurrent Respiratory Papillomatosis

Objectives: The objective of this study was to use the Pediatric Quality of Life Inventory (PedsQL), a 23-question modular instrument designed to measure the health-related quality of life (HRQOL) in children and adolescents, to compare the HRQOL in children with recurrent respiratory papillomatosis (RRP) with the HRQOLs reported for healthy children and children with other chronic medical conditions. Methods: The PedsQL version 4.0 Generic Core Scales consist of 23 questions in 4 subscales (Physical, Emotional, Social, and School Functioning) for parent-proxy reporting on the HRQOL in children ages 2 to 4 years, parent reporting for children 5 to 18 years, and child self-reporting for ages 5 to 7 years (age-adjusted questions and rating scales) and 8 to 18 years. The questionnaires were administered in person or by telephone to 22 children with RRP and (or, for children 2 to 4 years of age) one parent recruited from a tertiary pediatric otolaryngology practice. The results were compared with validated norms for healthy children and scores for children whose parents reported a chronic medical condition. Results: Compared with healthy controls, the children 5 to 18 years of age with RRP self-reported a significantly (p < .05) worse HRQOL as measured by the PedsQL Total Score, Psychosocial Health score (a combination of Emotional, Social, and School Functioning Scores), and Social Functioning and School Functioning scores. Self-reported scores for the children 5 to 18 years of age with RRP compared with children with other chronic illnesses followed the same trend, and the difference approached statistical significance (p = .05) for the School Functioning Subscale scores. The parent-proxy report (for children 2 to 18 years of age) scores for children with RRP were significantly lower (p < .0001) on every scale and in total compared with scores for healthy children. Compared with scores of children with other chronic medical conditions, the parent-proxy report scores were significantly lower for psychosocial health (p = .005) and school functioning (p<.0001). Conclusions: Children with RRP report a lower quality of life than do those who are healthy, and a quality of life similar to that of those who have other chronic medical problems. The parent reports also reflect a lower quality of life for children affected by this disease, as compared with healthy children. The PedsQL demonstrated a statistically significant low HRQOL in children with RRP; however, the clinical implications of this finding appear trivial. A distinct, disease-specific survey for RRP, if developed, would have enhanced responsiveness and sensitivity to change (due to the natural course of the disease and/or surgical treatments).