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 ( = .045) and more likely to be the first child for the family ( = .021) and have a bilateral cleft ( = .03). Caregivers of NAM patients were less satisfied with the outcome ( < .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.