Measuring What Matters: A Cross-Sectional Assessment of Disease-Specific Self- and Proxy-Reported Quality of Life in Pediatric Intestinal Failure

With greatly improved clinical outcomes in pediatric intestinal failure (PIF), the assessment of non-clinical, patient-reported outcomes (PROs) has become increasingly prioritized. One such outcome is patient quality of life (QoL). A growing body of work has investigated PIF patient QoL using generic assessment tools, such as the PedsQL, which measures patients’ health-related functioning. While there are nuances, this line of research has generally provided evidence of diminished health-related