Fact Sheet: Cleft Lip and/or Palate

Cleft lip and/or palate (CLP) is a congenital birth defect that occurs when there is a separation in the lip and/or palate. There is no identified single cause and current research suggests that a combination of genetic and environmental factors lead to CLP. CLP can be diagnosed prenatally via ultrasound or at birth.

Prevalence and Course

CLP occurs with a prevalence rate of 1 in 600 and is currently one of the most common congenital birth defects. CLP can occur in isolated fashion or as part of a more involved syndrome. 15 percent of cases of CLP involve a syndrome and clefts are part of 300 known syndromes. Children with CLP typically undergo a variety of surgical, speech and orthodontic interventions throughout their childhood and adolescence and are treated by a variety of disciplines.

Health and Psychosocial Consequences

While youth with CLP may be at increased risk for psychosocial difficulties including anxiety, lower self esteem, behavioral problems and learning problems, many youth with CLP do not experience psychosocial difficulties. Current literature suggests that social experiences and maternal well being help predict psychosocial adjustment. A recent meta-analysis found that individuals with clefts may demonstrate poorer cognitive functioning (especially for language) but suggests that more research is needed to make definitive statements.

Evidence-based Assessment

Important areas of assessment for psychologists working as part of the treatment team for children with CLP include psychosocial, cognitive, speech/language, behavioral and developmental functioning, as well as appropriateness for surgery. These areas are most commonly evaluated via interview; however, development and cognitive functioning are evaluated by some teams using questionnaires or cognitive testing. The most frequently used measures with this population include the Bayley Scales of Infant Development, the CBCL and the Wechsler Intelligence Scales.

Culture, Diversity, Demographic and Developmental Factors

Cleft palate affects children across all racial and ethnic groups. The incidence of cleft lip with or without cleft palate is highest in children of Asian descent and is least common in children with African ancestry. Relevant developmental factors include identity development as related to appearance and peer relationships, as well as ability to understand information about the medical condition and participate in surgical decision-making.

Evidence-based Interventions

Mental health services typically delivered with this population include behavior management and interventions related to psychosocial concerns such as teasing. Evidence-based interventions for psychological concerns in this population include social skills training, and cognitive-behavioral interventions such as relaxation training and cognitive restructuring to address presurgical anxiety and self-image concerns.

References

Berger, Z.E., & Dalton, L.J. (2011). Coping with a cleft II: Factors associated with psychosocial adjustment of adolescents with cleft lip and palate and their parents. Cleft Palate-Craniofacial Journal, 48(1), 82-90.

Hood, M., Cradock, M., & Vander Wal, J. (2010). A survey of psychological assessment on interdisciplinary craniofacial teams. Cleft Palate-Craniofacial Journal, 48(4), 425-444.

Kapp-Simon, K.A. (1995). Psychological interventions for the adolescent with cleft lip and palate. Cleft Palate-Craniofacial Journal, 32(2), 104-108.

Richman, L.C., McCoy, T.E., Conrad, A.L., Nopoulos, P.C. (2011 Epub). Neuropsychological, behavioral and academic sequelae of cleft: Early developmental, school-age and adolescent/young adult outcomes. Cleft Palate-Craniofacial Journal. PMID:21905907.

Roberts, R.M., Mathias, J.L., & Wheaton, P. (2012). Cognitive functioning in children and adults with nonsyndromal cleft lip and/or palate: A Meta-analysis. Journal of Pediatric Psychology, doi:10.1093/jpepsy/jss052.