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.

Bullying is a common child and adolescent phenomenon that has concurrent and long-term implications for victims' psychological, psychosomatic, social, and academic functioning. Youth with chronic illnesses are at increased risk for being bullied, but few studies have evaluated specific risk and protective factors for medically fragile youth. Despite recommendations by the American Academy of Pediatrics and the Society for Adolescent Medicine that pediatric health care providers should contribute to bullying prevention and intervention efforts, researchers also have yet to identify the best ways for providers to intervene with medically fragile youth. In this article, the authors review risk and protective factors for bullying among healthy samples. Then, the authors specifically address the ways in which these risk and protective factors are likely to apply to children with fragile medical conditions, and they provide summaries of extant bullying research for selected examples of medically fragile pediatric populations. Finally, the authors present recommendations for intervening with medically fragile youth and suggest several areas in which additional research is needed.

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Objective: The purpose of this study was to evaluate possible relationships between number of surgeries and parent ratings of academic functioning among children with isolated oral clefts. Design: Multicenter, retrospective cohort study including structured interviews, questionnaires, and chart reviews. Setting: Completion of questionnaires occurred during clinical visits at 6 different cleft centers across North America. Participants: Parents of 285 children with isolated clefts of the lip and/or palate, aged 8 to 10 years old, participated in structured interviews and completed questionnaires regarding the academic and behavioral functioning of their children. Main Outcome Measures: Parent interview and medical chart review of number of surgeries to date and parent ratings on the Adaptive Behavior Assessment System, Third Edition-Functional Academics Scale (ABAS-FA) and Child Behavior Checklist (CBCL) Total Competency Scale. Results: Parent ratings of ABAS-FA were at or above normative expectations, while ratings across CBCL Competency Scales were lower than normative expectations. Socioeconomic status (SES), age, and race were consistent predictors of parent ratings (higher SES, older age, and Caucasian race were associated with better functioning). Number of surgeries did not add significantly to academic ratings but did significantly contribute to ratings of social and activity participation. Patients with more surgeries were rated with lower functioning in these domains. Conclusions: Findings do not support a connection between number of surgeries and later ratings of academic functioning but do support a connection to social and activity involvement. Recommendations for conducting direct studies of the connection between surgeries and academic functioning as well as clinical considerations for surgeries and impact on social and activity involvement are discussed.