Quality of Life Among Children With Velocardiofacial Syndrome

Objective: To explore the health-related quality of life (QoL) among children with velocardiofacial syndrome (VCFS) and to compare QoL by gender and with samples of chronically ill and healthy children. Design and Setting: Cross-sectional design, comparing data obtained from a survey of parents of children with VCFS to previously published data from comparison groups of children who are healthy or who have other chronic conditions. Participants: Parents of 45 children aged 2 to 18 years with VCFS participated in this study. Results were compared with published data on the same measures from samples of parents of healthy children (n = 10,343) and children with a variety of chronic conditions (n = 683). Main Outcome Measures: Quality of life, including fatigue, was measured using the PedsQLTM Measurement Model. Strengths were assessed by parent report from a list of character traits developed from the Values in Action Classification System