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- Title
Assessing Burden of Care in the Patient With Cleft Lip and Palate: Factors Influencing Completion and Noncompletion of Nasoalveolar Molding.
- Authors
Dean, Riley A.; Wainwright, D'Arcy J.; Doringo, Irene L.; Teichgraeber, John F.; Greives, Matthew R.
- Abstract
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.
- Subjects
ATTITUDE (Psychology); CLEFT lip; CLEFT palate; HEALTH services accessibility; OUTPATIENT services in hospitals; SLEEP apnea syndromes; PLASTIC surgery; SURVEYS; THERAPEUTICS; INSTITUTIONAL review boards; SOCIAL support; TERMINATION of treatment; BURDEN of care; TREATMENT effectiveness; DISEASE prevalence; PATIENTS' attitudes
- Publication
Cleft Palate Craniofacial Journal, 2019, Vol 56, Issue 6, p759
- ISSN
1055-6656
- Publication type
Article
- DOI
10.1177/1055665618811526