Quality of life improves treatment of children with velocardiofacial syndrome: Research

Research about quality of life is improving the treatment of children with velocardiofacial syndrome, a chronic, genetic condition with a wide range of symptoms, including congenital heart disease, palatal abnormalities (e.g. cleft palate), and learning difficulties.

Studies have examined the physical and cognitive aspects of pediatric velocardiofacial syndrome, but until now quality of life has not been explored. "Quality of Life Among Children With Velocardiofacial Syndrome" adds to the growing body of knowledge that is aimed at improving the health and wellbeing of children faced with the physical, psychological, social, and spiritual challenges associated with this genetic condition.

Children with velocardiofacial syndrome, especially boys, struggle with fatigue and have trouble functioning in school. With the exception of physical health, boys and girls scored lower in emotional, social and school functioning than children with other chronic conditions. However, humor, caring, kindness, persistence and enthusiasm were identified as the top character strengths that help children with velocardiofacial syndrome cope with their condition.

The relationship between treatment and quality of life is a feedback loop. Quality of life is a reflection of the effectiveness of treatment. Understanding the various dimensions of quality of life helps researchers and clinicians develop better treatment strategies.

Although velocardiofacial syndrome presents formidable challenges to the children with this condition and to family and health care providers, the future is looking brighter as studies continue to provide methods of improving treatment and quality of life.

SOURCE The Cleft Palate-Craniofacial Journal