Challenges Of Nasoalveolar Molding In Outreach Settings
Serena Kassam, DDS1, Elie P. Ramly, MD2, Adam Johnson, MD1, Nicholas Toomey1, Emma Azurin1, Allyson Alfonso, BS, BA2, Kesley Brown1, Rami Kantar1, Barry Grayson, DDS2, Usama Hamdan, MD1.
1Global Smile Foundation, Boston, MA, USA, 2NYU Langone Health, NEW YORK, NY, USA.
Despite its reported advantages, NasoAlveolar Molding (NAM) therapy requires multiple patient visits and diligent caregiver involvement. The success of NAM implementation in outreach settings remains unknown to date. Several of Global Smile Foundation (GSF) founders and volunteers have been involved with outreach cleft programs for 32 years. In 2012, GSF incorporated NAM into its care model in Guayaquil, Ecuador. We present longitudinal data focusing on challenges to NAM compliance and completion.
A retrospective review of surgical and dental records was performed. Patient demographics, diagnosis, and duration/completion of NAM therapy were reviewed. Patient age, peri, intra, and post-operative procedural data were collected for primary cleft lip/nose and palate repair as well as additional procedures. Travel time was determined using patient-reported data and cross-referenced with google maps calculated routes.
A total of 189 patients received NAM. Patients came from 30 cities and 10 provinces. The average distance traveled was 106.7±95.4 (range: 3.7-402.1) kilometers and average travel time was 162.8±143.4 (range: 12-585) minutes. Of the 189 patients who received NAM, long-term follow up was available for 96 patients (50.8 %), while 84 (44.4%) were lost to follow up or subsequently seen by another foundation, and 9 (4.8%) are currently undergoing NAM or awaiting primary surgery. Of the 96 patients with long term follow up, 70 (72.9%) had Unilateral Cleft Lip and Palate and 26 (27.1%) had Bilateral Cleft Lip and Palate; 64 (66.67%) were male and 32 (33.3%) were female. Of those 96 patients, 58 (60.4%) completed NAM therapy, 17 (17.7%) failed to complete it, and 21 (21.8%) had incomplete NAM documentation.
The average age at NAM initiation was 36.36±31.39 days (range: 0-157 days) and average length of NAM therapy was 119±82.7 days (range: 1-222 days). Travel time, lack of resources, and the inconvenience or cost of acquiring supplies were common causes of incomplete therapy. Additional factors included complex medical history, late therapy initiation, skin/cheek irritation, and caregiver confusion about general instructions and/or subsequently prescribed adjustments. Patients underwent an average of 2.1±0.9 (range: 1-5) surgeries after NAM. Follow up was 2.0± 1.8 (0.2- 6.7) years from NAM initiation and 1.4±1.8 (0-6.5) years from primary Cleft Lip/nose repair.
NAM, in outreach settings, is feasible, with a majority of patients followed completing therapy despite wide geographic distribution. While travel time and lack of resources may contribute to decreased compliance, opportunities for positive intervention include earlier treatment initiation, caregiver education, and improved regional partnerships. Future directions will emphasize periodically revisiting caregiver expectations, providing additional psychosocial support, and leveraging local resources and emerging technologies to mitigate difficulties.
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