Craniofacial SIG Update

Development of a Fact Sheet to Assist with Referrals to Community Psychosocial Providers

Cleft lip and/or palate (CLP) is one of the most common birth defects in the United States, occurring in about 1 out of 600 live births.  Children with CLP typically undergo numerous surgical, speech, and orthodontic interventions throughout childhood and adolescence and are treated by a variety of disciplines, including speech and language pathology, surgery, audiology, orthodontics, dentistry and genetics, among others. Children with CLP are at risk for psychosocial problems including learning disabilities, developmental delay, poor self-concept, teasing/bullying, symptoms of depression or anxiety, and impaired family functioning. Many multidisciplinary teams have a mental health provider who provides brief assessment of cognitive, psychosocial, and developmental functioning and makes referrals for additional assessment or intervention of any concerns raised by the patient, family or medical team. These multidisciplinary teams are typically housed within medical centers or children’s hospitals. As is the case with many complex medical conditions, patients and families may have to travel a significant distance to be seen by this multidisciplinary team. This can present challenges for the provision of follow-up care required on a more regular basis, including outpatient psychotherapy. Subsequently, children and their families may be referred to local providers who are unlikely to have specialized knowledge about the types of concerns and risks associated with CLP.

Several years ago, the Craniofacial SIG hosted a discussion about the challenges presented in cleft care. The difficulty many of us have with finding mental health providers with cleft specific training or experience (or even formal pediatric or health psychology training) in local communities was cited as a common challenge. Through this discussion, it was determined that the SIG would create a Fact Sheet for Mental Health Providers working with patients with CLP.  This fact sheet was created by considering the psychosocial consequences that would be most relevant to outpatient mental health providers such as mood, learning, and behavioral concerns impacting patients, family factors, and developmental risks as well as briefly describing relevant evidence-based assessments and interventions. Our goal was for this fact sheet to be one page for ease of reading and reference for the community providers. After creating an initial draft, the fact sheet was circulated to SIG members for review and input. Feedback was then solicited from    psychotherapists, clinical psychologists and child and adolescent psychiatrists at a children’s hospital. The Fact Sheet has been finalized and distributed to SIG members via our SIG listerv. It is also available for downloading via the Craniofacial SIG website: www.

Because this Fact Sheet has been so well received by members, we hope to create additional teaching sheets addressing other craniofacial conditions (e.g., craniosynostosis) that can be used to facilitate referrals to community providers.