Developing A Sustainable Nasoalveolar Molding Program In Outreach Settings: An Eight-year Follow-up
Serena N. Kassam, DMD1, Elie P. Ramly, MD2, Emma T. Azurin, BS3, Nicholas Toomey, BS3, Allyson Alfonso, BS2, Rami Kantar, MD2, Adam Johnson, MD, PhD4, Barry H. Grayson, DMD2, Usama Hamdan, MD, FACS1.
1Global Smile Foundation, Norwood, MA, USA, 2New York University Langone Medical Center, New York, NY, USA, 3Tuft University School of Medicine, Boston, MA, USA, 4Arkansas Children's Hospital, Little Rock, AR, USA.
Global Smile Foundation (GSF) is a non profit foundation that provides comprehensive cleft care to underserved patients. GSF focuses on long-term follow up and sustainability of local healthcare teams, having engaged in 32 years of follow up in Ecuador. In 2012, GSF added presurgical NasoAlveolar Molding (NAM) therapy for their patients in Guayaquil, Ecuador, as part of its sustainability and empowerment initiative. We present longitudinal data on 189 patients treated with NAM and discuss the challenges/barriers to its completion.
Data was collected from GSF surgical and dental records including patient diagnosis, completion/incompletion and length of NAM therapy. Surgeon, patient age, peri, intra, and post-operative procedural data, were collected for primary cleft lip/nose and palate repair, and any additional surgeries. Follow up clinical and photographic data was retrieved to document long-term outcomes.
A total of 207 patients were treated with pre-surgical therapy: 189 patients received NAM therapy, while 18 patients were treated with lip tape and/or nasal elevator. Of the 189 NAM 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 118.98 ± 82.68 days (range: 1-222 days). Patients underwent an average of 2.13± 0.93 (range: 1-5) surgeries after NAM Initiation, with an average of 0.17 ± 0.43 (0-2) Cleft Lip/Nose Revisions, 0.06 ± 0.28 (0-2) GingivoPerioPlasty, 0.06 ± 0.28 (0-1) pre-maxillary setbacks, 0.07 ± 0.30 (0-2) fistula repairs, and 0.03 ± 0.17 (0-1) Velopharyngeal Insufficiency corrections.
Over an 8 year period, 12 NAM providers were trained in Ecuador, 7 provided treatment in Ecuador, and 5 provided treatment internationally, making Ecuador a site for information exchange. Follow-up for NAM patients was an average of 2.00 ± 1.77 (0.22 - 6.67) years after NAM initiation and 1.45 ± 1.77 (0 - 6.52) years after their primary Cleft Lip/Nose Repair. This includes continued long term follow up and comprehensive cleft care in addition to NAM therapy.
With yearly patient follow-up and year-round partnership with local professionals, our model shows successful long-term delivery of NAM therapy as part of a sustainable comprehensive cleft care strategy in outreach settings.
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