Defining the Treatment Gap in Nasoalveolar Molding: Factors Affecting the Utilization of NAM in an Urban Cleft Center
Jenn J. Park, Allyson A. Alfonso, Aneesh Kalra, Roberto L. Flores, Pradip R. Shetye
NYU Langone Health, New York, NY
Background: Nasoalveolar molding (NAM), an early presurgical intervention to align the cleft alveolus segments, reduces cleft severity to facilitate primary repair and leads to improved lip and nasal form. In the past decade, an increasing majority of cleft centers have incorporated NAM into treatment protocols. However, there are limited data on the subset of patients who are eligible for but ultimately do not receive NAM treatment. Here, we characterize the patient group who did not undergo NAM and identify demographic differences from the patients undergoing NAM at our institution.
Methods: A single institution retrospective review was performed of all patients with cleft lip and alveolus undergoing primary unilateral and bilateral cleft lip repair from 2012-2020. Patients were grouped based on NAM status. Demographic data including gender, race, family history of cleft, caregiver marital status, caregiver primary language, and distance of family from the cleft center were collected. Treatment data, including documented reason for not pursuing nasoalveolar molding and use of presurgical or postsurgical nostril retainer, were collected.
Results: We identified 235 patients eligible for NAM undergoing primary cleft repair. There were 61 patients who did not undergo NAM (no-NAM) and 174 patients who underwent NAM (NAM). In the no-NAM group, 37 (60.7%) received no presurgical intervention, 12 (19.7%) received presurgical nostril retainers only, 3 (2.9%) received lip taping only, 1 (1.6%) received combination of taping and nostril retainers, and 8 (13.1%) discontinued NAM treatment. The most common reasons for not receiving NAM therapy were a cleft alveolus with sufficient alignment (21.3%), medically complex patient (16.4%), late presentation (16.4%), and alveolar notching (18%). Compared to the NAM group, the no-NAM group had significantly higher proportion of non-married caregivers, caregivers whose primary language was not English, and patients without private insurance (p < 0.001). There was no significant difference in the distance of family from the treatment center between groups. In patients who did not undergo NAM, 9 (14.7%) underwent postsurgical nasal stenting, compared to 71 (40.8%) in the NAM group (p < 0.001).
Conclusions: Common reasons for non-utilization of NAM include well-aligned cleft alveolus, medical complexity, and late presentation. Socioeconomic factors such as caregiver marital status, primary language, and insurance that may affect rates of NAM treatment.
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