RESUMO
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 PedsQL(TM) Measurement Model. Strengths were assessed by parent report from a list of character traits developed from the Values in Action Classification System. RESULTS: Quality of life was lower across all domains compared with healthy children. Boys with VCFS scored significantly lower than girls on school functioning (p < .05) and cognitive fatigue (p < .01). Compared with children with chronic conditions, children with VCFS scored lower on emotional (p < .01), social (p < .01), and school functioning (p < .001) but not on physical health. Parents described their children's strengths as humor, caring, kindness, persistence, and enthusiasm. CONCLUSIONS: Quality of life among children with VCFS is characterized by significant challenges in the cognitive, social, and emotional domains. These children have strengths that may be useful in coping with the daily challenges of this condition.
