Presurgical Cleft Management of Infants: A Survey of ACPA Approved and International Cleft Palate and Craniofacial Teams

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Abstract

Objective

To characterize the presurgical infant orthopedics (PSIO) and gingivoperiosteoplasty (GPP) protocols across the American Cleft Palate-Craniofacial Association (ACPA) approved and international cleft palate (CP) and craniofacial teams.

Design

Cross-sectional survey.

Setting

ACPA approved and international CP and craniofacial teams.

Results

Respondents from 115 out of 215 ACPA approved and international CP and craniofacial teams permitted to contact (out of a total of 259 total teams) completed the survey (response rate = 53.5%). There were 89 (77.4%) ACPA approved teams and the remaining international teams were mainly located in Europe (13.0%). Seventy-eight CP and craniofacial teams (67.8%) provided PSIO and 65 (83.3%) of these teams used alveolar molding (AM). Twenty-two CP and craniofacial teams (19.1%) provided GPP. A mean of 9.5 ± 2.6 different specialists were on the cleft team with the most common being orthodontists (97.4%), speech therapists (96.5%), and plastic/craniofacial surgeons (90.4%).

Conclusions

Most ACPA approved and ACPA registered international CP and craniofacial teams provided PSIO techniques by orthodontists using lip taping (LT) and AM, while few provide GPP.

Related collections

Most cited references 21

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The original Eurocleft project, a European intercentre comparison study, revealed dramatic differences in outcome, which were a powerful stimulus for improvement in the services of respective teams. The study developed a preliminary methodology to compare practices and the potential for wider European collaboration including opportunities for the promotion of clinical trials and intercentre comparison was recognized by the European Commission. Therefore, the project: 'Standards of Care for Cleft Lip and Palate in Europe: Eurocleft' ran between 1996 and 2000 and aimed to promote a broad uplift in the quality of care and research in the area of cleft lip and palate.

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Nasoalveolar molding: prevalence of cleft centers offering NAM and who seeks it.

Hillary Broder, Anthony Smith, Edward W. Chan … (2012)

Nasoalveolar molding (NAM) is a treatment option available for early cleft care. Despite the growing debate about the efficacy of nasoalveolar molding, questions remain regarding its prevalence and the demographic characteristics of families undergoing this technique prior to traditional cleft surgery. To determine the number of teams currently offering nasoalveolar molding and to identify salient clinical and sociodemographic variables in infants and families who choose nasoalveolar molding compared with those who choose traditional cleft care across three well-established cleft centers. Via phone surveys, 89% of the U.S. cleft teams contacted revealed that nasoalveolar molding is available at 37% of these centers. Chart reviews and phone correspondence with caregivers indicate that the average distance to the cleft center was 65.5 miles and caregiver age averaged 30.9 ± 5.7 years. Of families who chose nasoalveolar molding, 85% received total or partial insurance coverage. No difference in caregiver education, income, or distance to the clinic between treatment groups was found. On average, infants receiving nasoalveolar molding and cleft surgery had larger clefts and had more clinic visits than infants receiving traditional cleft surgery. Infants who were firstborn and those who did not have other siblings were more likely to receive nasoalveolar molding than were infants who were residing with other siblings. Currently more than one-third of U.S. cleft centers offer nasoalveolar molding. Although the cleft size was larger in the nasoalveolar molding group, no treatment group differences in education, income, and distance to the clinic were found.