Margot Stein

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

Introduction 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. Objectives 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. Results 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. Conclusions 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.

Parent-Reported Family Functioning Among Children With Cleft Lip/Palate.

Objective To examine family functioning related to sociodemographic and clinical characteristics in youth with cleft lip and/or palate (CL/P) Design Cross-sectional, multi-site investigation. Setting Six U.S. cleft centers. Patients/Participants A diverse sample of 1200 children with CL/P and their parents. Main Outcome Measure Parents completed the Family Environment Scale (FES), which assesses three domains of family functioning: cohesion (or closeness), expressiveness (open expression of feelings), and conflict. Demographic and clinical characteristics were also assessed including race, ethnicity, type of insurance, and surgical recommendations. Results The FES scores for families seeking team evaluations for their youth with CL/P (mean age = 11.6 years) fall within the average range compared with normative samples. Families receiving surgical recommendations for their youth also had FES scores in the average range, yet families of children recommended for functional surgery reported greater cohesion, expressiveness, and less conflict compared with those recommended for aesthetic surgery (P < .05). For cohesion and expressiveness, significant main effects for race (P = .012, P < .0001, respectively) and ethnicity (P = .004, P < .0001, respectively) were found but not for their interaction. No significant differences were found on the conflict domain. Families with private insurance reported significantly greater cohesion (P < .001) and expressiveness (P < .001) than did families with public insurance. Conclusions Family functioning across domains was in the average range. However, observed differences by race, ethnicity, type of insurance, and surgical recommendation may warrant consideration in clinical management for patients and families.

Natural Disaster and Crisis: Lessons Learned About Cleft and Craniofacial Care From Hurricane Katrina and the West Bank

Cleft care is generally characterized by staged, carefully timed surgeries and long-term, team-centered follow-up. Acute and chronic crises can wreak havoc on the comprehensive team care required by children with craniofacial anomalies. In addition, there is evidence that crises, including natural disasters and chronic disruptions, such as political turmoil and poverty, can lead to an increased incidence of craniofacial anomalies. The purpose of this article is to delineate the impact of acute and chronic crises on cleft care. Hurricane Katrina in New Orleans, Louisiana, in 2005, resulted in an acute crisis that temporarily disrupted the infrastructure necessary to deliver cleft care; chronic turmoil in the West Bank/Palestine has resulted in an absence of infrastructure to deliver cleft care. Through these central examples, this article will illustrate—through the prism of cleft care—the need for (1) disaster preparedness for acute crises, (2) changing needs following acute crises that may lead to persistent chronic disruption, and (3) baseline and long-term monitoring of population changes after a disaster has disrupted a health care delivery system.

Flood, disaster, and turmoil: Social issues in cleft and craniofacial care and crisis relief

Objective To examine social issues in the conduct of cleft and craniofacial care through relief programs in disrupted crisis contexts. Method Social, health policy, and ethical analyses. Results At best, craniofacial team care is multidisciplinary, coordinated, and sustained, requiring a long-term relationship between team members, patients, and families. Disasters and societal turmoil interrupt such relationships, causing craniofacial care to become a secondary concern. Providing craniofacial team care in a crisis setting requires rebuilding disrupted coordination and communication. Crisis relief care involves a complex set of expectations and responsibilities and raises issues such as (1) quality assurance, infection control, appropriate standards of care, and follow-up care/continuity; (2) equity of access to services and clinical ethics in the context of war and/or deprivation; (3) training of visitors in the local nation or site; (4) disciplinary composition of teams, interprofessional communication/rivalry, and credentials of clinicians; (5) ownership of the site and local visitor relations; (6) fundraising and marketing strategies; and (7) ethical issues in the doctor-patient relationship. Conclusions Specific ethical standards for international cleft and craniofacial care delivery also apply to domestic and global crisis relief contexts. Guidance on issues related to professional experience, informed consent, and continuity of care will help care providers address social and ethical issues raised in crisis relief programs. This paper proposes that the Position Paper of the American Cleft Palate-Craniofacial Association (ACPA) on International Treatment Programs should be used as a template to develop and disseminate a set of standards that apply to crisis relief.