Adam D. Glener, BS
,
School of Medicine, Duke University, Durham, NC
Ronnie L Shammas, BS
,
Division of Plastic, Maxillofacial, and Oral Surgery, Duke University, Durham, NC
Alexander C. Allori, MD, MPH
,
Plastic, Maxillofacial, and Oral Surgery, Duke University Medical Center, Durham, NC
Anna R. Carlson, MD
,
Plastic, Maxillofacial, and Oral Surgery, Duke University, Durham, NC
Irene J Pien, MD
,
Division of Plastic & Reconstructive Surgery, University of California, Los Angeles, Los Angeles, CA
Arthur S. Aylsworth, MD
,
Pediatric Genetics and Metabolism, University of North Carolina, Chapel Hill, NC
Robert Meyer, PhD, MPH
,
State Center for Health Statistics, Department of Health and Human Services, Raleigh, NC
Luiz Pimenta, DDS, PhD
,
Dental Ecology, University of North Carolina, Chapel Hill, NC
Ronald Strauss, DMD, PhD
,
Dental Ecology, University of North Carolina, Chapel Hill, NC
Barry Ramsey, BS
,
Center for Health Promotion and Disease Prevention, University of North Carolina, Chapel Hill, NC
Stephanie Watkins, PhD, MSPH
,
Dental Ecology, University of North Carolina, Chapel Hill, NC
Jeffrey R. Marcus, MD
,
Plastic, Maxillofacial, and Oral Surgery, Duke University Medical Center, Durham, NC
Background: The cleft lip and/or palate (CL/P) deformity carries a social stigma, but the details of this stigma and the associated social implications are not well defined. An improved understanding of this stigma may help to develop interventions to decrease the social difficulties that accompany CL/P. The purpose of this population-based study was to elucidate the social concerns, challenges, and implications that accompany CL/P, and ascertain differences amongst these concerns based on the age of the affected child. We hypothesize that social concerns surrounding CL/P exist at all ages, but are most prevalent and significant in middle school and high school aged children.
Methods: Children with non-syndromic CL/P and unaffected children born during 1997-2003 were identified through the North Carolina Birth Defects Monitoring Program and review of birth certificates, respectively. The social implications of CL/P were measured via a 34-question subset of a larger survey, intended for completion by parental proxy or by the affected child (age permitting). Responses were categorized and analyzed based upon the school age of the child: elementary school aged, middle school aged, and high school aged children.
Results: The survey was completed by parental proxy for 176 children with CL/P (response rate = 33%) and 333 controls (response rate = 27%). Compared to unaffected children, patients with CL/P were significantly more likely (p<0.05) to 1) have to repeat what they said so others could understand 2) be shy around other children their age 3) have others stare at their face 4) be teased about their looks 5) be teased about their speech and 6) less likely to have a best friend their age (all p<0.05). In aggregate, 9/34 socially based questions had a significantly different distribution in CL/P children when compared to unaffected children (p<0.05). When subdivided by school age, this significance was retained in 2/9, 8/9, and 4/9 questions for elementary, middle, and high school aged children, respectively.
Conclusion: This is the first population-based study describing the social implications of the CL/P deformity. Furthermore, the implications change with the children’s social environment; they are most pronounced during middle school, and less so during elementary and high school.
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