Health Policy


Health-Related Quality of Life in Children Ages 4 - 9 with Oral Clefts

Health-related quality of life in children with oral clefts ages 4-9 was evaluated using a written survey to parents in Iowa, Arkansas and New York. Funding is provided by the NFFR. The mail-out survey assessed current health-related quality of life, health status and well being in a cohort of infants with orofacial clefts born between January 1, 1998 and December 31, 2003 and initially ascertained and enrolled by the participating centers for the National Birth Defects Prevention Study.

Clinic-based studies of children with craniofacial anomalies such as oral clefts indicate that they usually, have positive self-concepts. Some children, however, experience psychosocial problems including anxiety, depression, social inhibition, low self-esteem, self-consciousness about their appearance, social adjustment problems, and reduced acceptance by their peers. Others develop more slowly than peers or experience behavior problems. These problems may be first recognized and become more pronounced as the child begins school and again as the child enters the teenage years.

Almost all studies in the literature have been conducted on limited samples recruited from a clinic or group of clinics. Because follow-up of children identified by population-based birth defects surveillance systems is relatively new, there are few studies of the quality of life of children with orofacial clefts that can be generalized to larger groups. Results from this population-based cohort will permit us to identify the percentage of children with orofacial clefts who experience emotional, behavioral and social problems as they enter school age.

A written survey containing state of the art measures was mailed to parents of children ages 4-9 who were born with oral clefts. The survey addresses current physical and behavioral concerns or symptoms, functional limitations, emotional well-being, and social well-being. Health-related quality of life was 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 placed or rated 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.

A total of 307 usable surveys were received from 628 eligible cases, representing an overall response rate of 49%. Sixty-two percent of the subjects are male, 38% are female. The cleft type distribution is 26% lip only, 31% palate only, and 43% lip and palate. As in prior studies, there is a higher proportion of female children in the cleft palate-only group (51%) than in the lip only (33%) or lip+palate (31%) groups (p=.007). Tabulation and scoring of raw data is complete and complex analysis is underway.