Speech-language pathologists should participate in the habilitative process of infants born with craniosynostosis from the first few weeks of life, and even prenatally, according to a consensus document on diagnosis, treatment, and management parameters recently released by a working group assembled for the Centers for Disease Control and Prevention (CDC).
Craniosynostosis is a condition in which one or more cranial sutures close too early. Patients with synostosis (abnormal fusion) of a single suture can have associated developmental delays and other functional problems (Kapp-Simon, 1998; Kapp-Simon, Leroux, Cunningham, & Speltz, 2005; Ruiz-Correa et al., 2007; Speltz et al., 2007). Patients with multisuture synostosis are apt to have associated physical anomalies such as midface hypoplasia, hearing impairment, visual impairments, nasopharyngeal airway obstruction, dysphagia, heart and lung abnormalities, and anomalies of the extremities. These patients are prone to difficulties in communication skill development.
The new parameters were developed at an interdisciplinary conference in 2010, funded by the CDC and organized by the National Foundation for Facial Reconstruction. The seven-member Steering Committee sought and received participation from a range of professions, including anesthesiology, craniofacial surgery, pediatric dentistry, genetics, hand surgery, neurosurgery, nursing, ophthalmology, oral and maxillofacial surgery, orthodontics, otolaryngology, pediatrics, psychology, public health, radiology, and speech-language pathology. The full parameters appear in the Cleft Palate-Craniofacial Journal (McCarthy et al., 2011).
Communication Skill Parameters
In craniosynostosis, anatomic abnormalities of the oropharyngeal and otologic systems, as well as the negative social reaction to physical differences, can impair communication skills. In addition, some patients have cognitive problems and language development abnormalities.
Although no audiologists were present at the conference, the parameters developed by the pediatric otolarynogologists together with speech-language pathologists addressed the need for audiologic and otolaryngologic assessments in the neonatal period, management of otologic and airway problems, and routine follow-up throughout childhood.
The parameters document presents guidelines for the care of patients and families from the time of prenatal diagnosis into adulthood. The recommendations call for SLP participation in the habilitative process from the first few weeks of life, and even prenatally if parents want information about the possible effects of craniosynostosis on communication development.
According to the parameters, SLPs are charged with:
- Early and ongoing assessment of communication development, including preverbal responsiveness to the environment, development of communicative intent, babbling, and first meaningful words.
- Observation of the effects of oropharyngeal structural defects on early speech-sound production, and follow-up on the effects of any craniofacial surgery on speech-sound production and the progress of communication development.
- Assistance with the assessment and amelioration of feeding problems.
The parameters call for consistent, ongoing interaction between SLPs and other caregivers as patients grow into adulthood and stress the importance of providing longitudinal, consistent care for patients and families and support even after a patient reaches adulthood.
Knowing that SLPs function in many different types of professional settings and often have caseloads that include patients with a wide variety of diagnoses, the conference participants identified the following qualifications for SLPs treating patients with craniosynostosis:
- Certificate of Clinical Competence (CCC) and state board license.
- Special training on this patient population and the types of assessment that may be needed.
- Maintenance of a clinical caseload that ensures regular experience with the speech and feeding problems of children with craniofacial anomalies.
- Membership in an interdisciplinary craniofacial team.
- Commitment to attend craniofacial team meetings and discuss treatment planning and outcomes.
- Ongoing continuing education and expertise in speech and feeding problems related to craniofacial anomalies (e.g., participation in programs of ASHA Special Interest Group 5, Speech Science and Orofacial Disorders).
- Adherence to ASHA's Preferred Practice Patterns for the Profession of Speech-Language Pathology (2004) and the American Cleft-Palate Craniofacial Association's Parameters for Evaluation and Treatment of Patients With Cleft Lip/Palate or Other Craniofacial Anomalies (1993) regarding evaluation of velopharyngeal function.
Development of communication skills in patients with the various forms of craniosynostosis vary from normal (or nearly normal) to significantly impaired. The multidisciplinary teams who treat these patients typically include at least one SLP and audiologist. However, the success of treatment also depends on the expertise of SLPs and audiologists who treat the patient. It is hoped that the recently developed parameters of care will help SLPs and audiologists provide accurate diagnosis, appropriate treatment, and follow-up care for patients with craniosynostosis.
The development of the Parameters of Care for Craniosynostosis was supported by Centers for Disease Control and Prevention Grant number 1U50DD000470-01, "Development of Guidelines and Educational Materials for Craniofacial Malformations," to the National Foundation for Facial Reconstruction.