The Americleft Psychosocial Outcomes Project: A Multicenter Approach to Advancing Psychosocial Outcomes for Youth With Cleft Lip and Palate

Abstract

Cleft lip and/or palate (CL/P) are among the most common of all birth defects. Habilitation requires multiple surgeries and other therapies throughout childhood and adolescence. While multidisciplinary care is recommended, there is a great deal of variation in treatment protocols for this condition. There is ample evidence that children with CL/P are at risk for psychosocial problems. However, to date, few studies have systematically investigated parent and patient self-reported psychosocial and quality of life (QOL) outcomes for children with CL/P as they relate to variations in treatment protocols. The Americleft Outcomes project was initiated to demonstrate and document outcomes to be expected with team care, and to define the key features or characteristics of various team treatment protocols and procedures that are associated with more or less favorable/desirable outcomes. This article will describe the psychosocial component of the Americleft Outcomes project that is aimed at developing a protocol that will allow cross team assessment of psychosocial outcomes for children with CL/P in relationship to the treatments they received. The protocol will be detailed along with a description of the process and considerations that were instrumental in the development of the project. Stakeholder input about the project’s perceived relevance to families of children with CL/P will be reported. The paper concludes with a discussion of the challenges encountered with this project, clinical implications, and future directions.