Validated patient-reported outcome instruments for velopharyngeal insufficiency.

Abstract

Velopharyngeal insufficiency (VPI) affects speech, swallowing, and many psychosocial aspects of life in a way best measured by quality-of-life (QOL) instruments. QOL instruments are patient-reported outcome instruments that provide a method of measuring the value that patients place on their health-related experiences. These instruments allow us to quantify patients' QOL during assessment as well as the clinical improvement that we seek with treatment. Two instruments have primarily been used in the VPI population: the Pediatric Voice Outcomes Survey (PVOS) and the VPI Effects on Life Outcomes (VELO) survey. Each has undergone a different level of assessment. The first step in using an instrument involves understanding how it functions. The PVOS was modified from an adult voice-specific functional status instrument. It was tested for reliability and validated against other patient-reported instruments and has been used to measure change in voice function with VPI surgery. The VELO was developed with comprehensive VPI-specific content and validated against several other measures important in VPI. It was found to be reliable and responsive to change in QOL. The VELO has several subscales (Speech Problems, Swallowing Problems, Situational Difficulty, Perception by Others, Emotional Impact, and Caregiver Impact) that can be used to understand the subtleties of QOL in patients with VPI. Comparison of the effect sizes shows that the VELO has a larger effect size (1.1) than the PVOS (0.6) and may be more capable of detecting change in QOL with treatment. These instruments can be useful for patient assessment, providing a framework for discussion and providing data for research.