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DEVELOPMENT OF A DISEASE SPECIFIC QUALITY OF LIFE SURVEY FOR CHILDREN WITH VESICOURETERAL REFLUX
Brian Minnillo*, Fernando Carvas, Frank Penna, David Yao, Alan Retik, Hiep Nguyen, Boston, MA
INTRODUCTION AND OBJECTIVES: Change in health-related quality of life (HRQoL) is an important, yet under reported means to assess medical management beyond traditional surgical and clinician assessed outcomes. Recently, we demonstrated that VUR, although a chronic condition, did not significantly impact HRQoL using the validated Pediatric Quality of Life Inventory (PedsQL™). Concern about the specificity of this survey prompted us to validate our own vesicoureteral specific survey. The aims of this study were to prospectively assess the HRQoL of children with VUR who have either been treated medically or with surgery using a validated disease specific survey. METHODS: A literature search was performed to identify all reported pediatric HRQoL. A panel of 10 practicing pediatric urologists reviewed the questionnaires to identify the questions most relevant to VUR. A prospective longitudinal study was then conducted by distributing the newly formed survey to all patients 18 years or younger diagnosed with VUR. Parents were instructed to complete the survey to assess 5 life domains. A total of 85 subjects (70% female, mean age: 3.7, 68% on antibiotics, 81% no surgery) completed the questionnaire and 42 subjects were assessed twice for validation. The survey demonstrated evidence of internal consistency reliability in all 5 domains (Cronback’s alpha: 0.80 to 0.86) and test-retest reliability (intraclass correlation coefficients: 0.78 to 0.90). RESULTS: In the five domains surveyed, patients demonstrated overall satisfactory HRQoL (Table 1). Patients’ HRQoL was not at all affected or was affected a little bit in 77% or greater of those surveyed in all categories except PS2. There were no significant differences in reported HRQoL between patient subgroups of antibiotics vs. no antibiotics, surgery vs. no surgery, and 2 or more UTIs vs. no UTI. CONCLUSIONS: The validated disease specific VUR survey is a receptive, easily administered instrument with strong internal consistency and reliability. Our data demonstrates that VUR does not significantly impact patients’ HRQoL. This validation of a VUR specific HRQoL survey is an important tool for improving our understanding of clinical outcomes data and satisfaction of care from the patients’ perspective. Source of Funding: None.
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