Assessing Burden of Care in the Patient With Cleft Lip and Palate: Factors Influencing Completion and Noncompletion of Nasoalveolar Molding

Objective: Evaluate the factors that influence caregiver-reported completion of nasoalveolar molding (NAM) therapy for patients with cleft lip and palate. Design: An IRB-approved 30-question survey. Setting: Outpatient clinic for patients with cleft lip. Patients: Patients with unilateral or bilateral cleft lip treated with NAM therapy. Interventions: Survey of previous experiences. Main Outcome Measure(s): Rate of noncompletion for patients initiating NAM therapy and identifiable causes. Results: Of 94 patients who underwent NAM, 13 (13.8%) failed to complete NAM therapy. Reasons for incomplete treatment included: obstructive sleep apnea, device intolerance, tape issues, and lack of support. Patients who did not complete NAM therapy were less likely to have primary caregivers >30-year old (P = .045) and more likely to be the first child for the family (P = .021) and have a bilateral cleft (P = .03). Caregivers of NAM patients were less satisfied with the outcome (P < .001) when they did not complete therapy. Conclusion: This study shows that a high number of parents fail to complete this therapy for many reasons, personal and medical. More data are needed to elucidate true prevalence of NAM noncompletion and to establish evidence-based guidelines to reduce barriers to care for completing NAM treatment.