Health-Related Quality of Life Among Preadolescent Children with Oral Clefts: The Mother's Perspective

OBJECTIVE: The purpose of this study was to evaluate the factors that affect the health-related quality of life of preadolescent children with nonsyndromic oral clefts using the Pediatric Quality of Life Inventory instrument and to evaluate whether there were any differences related to the type of cleft or other factors.

METHODS: Data for this study were derived from telephone interviews with the parents of a statewide population of children who were in the Iowa Registry for Congenital and Inherited Disorders, were aged two to 12 years, had nonsyndromic oral clefts, and were born in Iowa between January 1, 1990, and December 31, 2000. Twenty-minute interviews were conducted with mothers of 104 children in the spring and summer of 2003; respondents then completed and mailed back Pediatric Quality of Life Inventory surveys two to three weeks after the interviews (69 percent participation rate).

RESULTS: After controlling for demographic characteristics, children with less severe speech problems had higher total Pediatric Quality of Life Inventory scores as well as higher physical and psychosocial health domain scores. Age and cleft type interacted, with younger children (aged two to seven years) with a cleft lip or cleft lip and palate having higher health-related quality of life scores than children with an isolated cleft palate; however, this pattern was reversed for older children (aged eight to twelve years).

CONCLUSIONS: Speech and aesthetic concerns seem to have been important factors affecting the health-related quality of life for children with oral clefts. These factors seem to be more important as children get closer to adolescence (ages eight to twelve years) when acceptance by peers becomes more critical.