In collaboration with the Arkansas Center for Birth Defects Research and Prevention, the National Foundation for Facial Reconstruction (NFFR), and the Iowa Registry for Congenital and Inherited Disorders (IRCID) the University of Iowa Public Policy Center, will conduct a mail-out survey of parents of teenagers, ages 13-17, born with an isolated cleft lip and/or cleft palate to evaluate the health-related quality of life (HRQL) of those adolescents and their parents. This study is funded by the US Department of Health & Human Services, Centers for Disease Control & Prevention, Iowa Center for Birth Defects Research and Prevention.
Because clefting can result facial and speech differences which can persist to some degree throughout life, it is often assumed that consequences of the structural anomaly will have a lasting impact on quality of life and mental health. This assumption has not been clearly borne out in existing research. For example, some studies conclude that children with clefts are more socially withdrawn and inhibited than other children. Other studies come to seemingly different conclusions: in these studies children with clefts have fewer psychosocial and social relationship deficits than other children.
The survey addresses current physical and behavioral concerns or symptoms, functional limitations, emotional well-being, and social well-being. Health-related quality of life is measured in two ways: the Pediatric Quality of Life Questionnaire (PedsQL™4.0), a widely used multidimensional instrument, and a Visual Analog Scale, on which parents rate their child’s current health and well being on a horizontal line with end points of 0 (worst imaginable) and 100 (perfect health and well-being.) Brief standardized self-report measures are used to screen for potential problems related to anxiety, depression, attention problems and other emotional or behavioral difficulties. Items related to risky teen behaviors such as alcohol, drug and tobacco use are included in the survey. Initial surveys were mailed in spring 2009.