Journal article
The Americleft Psychosocial Outcomes Project: A Multicenter Approach to Advancing Psychosocial Outcomes for Youth With Cleft Lip and Palate
Clinical practice in pediatric psychology, Vol.5(1), pp.65-76
03/2017
DOI: 10.1037/cpp0000172
PMCID: PMC6738562
PMID: 31511822
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.
Details
- Title: Subtitle
- The Americleft Psychosocial Outcomes Project: A Multicenter Approach to Advancing Psychosocial Outcomes for Youth With Cleft Lip and Palate
- Creators
- Canice E Crerand - Center for Biobehavioral Health, The Research Institute at Nationwide Children’s Hospital, Columbus, Ohio, and Departments of Pediatrics and Plastic Surgery, The Ohio State University College of MedicineAmy L Conrad - The Stead Family Department of Pediatrics, Division of Pediatric Psychology, University of Iowa Children’s HospitalMeredith Albert - Cleft-Craniofacial Clinic, Departments of Psychology and Pediatric Plastic, Surgery, Shriners Hospitals for Children-Chicago, Illinois, and Craniofacial Center, Department of Surgery, University, of Illinois at ChicagoClaudia Crilly Bellucci - Cleft-Craniofacial Clinic, Departments of Psychology and Pediatric, Plastic Surgery, Shriners Hospitals for Children-ChicagoCelia E Heppner - Fogelson Plastic and Craniofacial Surgery Center, Children’s Health/Children’s, Medical Center, Dallas, Texas, and University of Texas, Southwestern Medical CenterFarah Sheikh - Division of Plastic and Reconstructive Surgery, The Hospital for Sick Children, Toronto, Ontario, CanadaSuzanne Woodard - Lancaster Cleft Palate Clinic, Lancaster, PennsylvaniaKathleen A Kapp-Simon - Cleft-Craniofacial Clinic, Departments of Psychology and Pediatric Plastic Surgery, Shriners Hospitals for Children-Chicago and Craniofacial Center, Department of Surgery, University of Illinois at Chicago
- Resource Type
- Journal article
- Publication Details
- Clinical practice in pediatric psychology, Vol.5(1), pp.65-76
- DOI
- 10.1037/cpp0000172
- PMID
- 31511822
- PMCID
- PMC6738562
- NLM abbreviation
- Clin Pract Pediatr Psychol
- ISSN
- 2169-4826
- eISSN
- 2169-4834
- Grant note
- DOI: 10.13039/100003690, name: Cleft Palate Foundation
- Language
- English
- Date published
- 03/2017
- Academic Unit
- Pediatric Psychology; Stead Family Department of Pediatrics; Iowa Neuroscience Institute; Craniofacial Anomalies Research Center
- Record Identifier
- 9984070478102771
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