The Burden of Care in Nasoalveolar Molding Treatment in Cleft Patients

Magyar, Dominika; Nemes, Balázs; Pálvölgyi, L; Pulay, Zoltán; Nagy, Kornél

doi:10.1055/s-0042-1744219

Cited by 9 publications

(9 citation statements)

References 16 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Magyar and his colleagues conducted a survey-based study in 2022 that confirmed the findings of this study [ 44 ]. The study utilized a 32-item questionnaire following NAM therapy and involved 17 families.…”

Section: Discussionsupporting

confidence: 79%

Caregivers’ Experience with Lip Taping as a Presurgical Orthopedic Treatment for Cleft Lip and Palate Defects

Thair,

Abid,

Dziedzic

2024

Children

View full text Add to dashboard Cite

Background: This study aimed to assess caregivers’ experiences and perceptions of applying lip taping as presurgical orthopedic therapy (PSO) for infants with a cleft lip and palate. Methods: A retrospective survey was conducted, inviting parents to respond to a series of structured questions between September 2022 and June 2023. The questionnaire focused on evaluating parents’ experience with lip taping, a crucial component of PSO. Descriptive statistics and the Chi-square test were employed to analyze relationships between categorical variables. Results: Of the 157 participants, overall, 122 completed the survey, forming the dataset for analysis. A majority (90.0%) reported sufficient experience in using lip taping and no major difficulties with lip taping application. Caregivers with higher education levels exhibited a significantly positive correlation (p = 0.015). Additionally, 93.4% confirmed the efficacy of lip taping for premaxillary segment retraction, with this outcome being correlated with caregivers’ knowledge and education (p = 0.008). Interestingly, caregivers’ age also demonstrated a substantial association (p = 0.020). Conclusions: While a vast majority expressed positive experiences with lip taping as a presurgical treatment, continuous, tailored education on cleft lip and palate is imperative. This education should be directed towards caregivers and individuals offering direct support to parents of children with CLP, ensuring optimal care and preparation for surgical treatment.

show abstract

Section: Discussionsupporting

confidence: 79%

Caregivers’ Experience with Lip Taping as a Presurgical Orthopedic Treatment for Cleft Lip and Palate Defects

Thair,

Abid,

Dziedzic

2024

Children

View full text Add to dashboard Cite

show abstract

“…To our knowledge, no other studies have reported compliance rates with postoperative NS after primary CLR, though the noncompliance rate for presurgical NAM has been reported to range from 20% to 37%. [11][12][13] A recent study demonstrated that the use of NS after CLR was associated with low perceived infant comfort levels as rated by caregivers. 14 This offers a possible explanation for the relatively high rate of noncompliance observed in our cohort, and it is important to note that discomfort, nasal congestion, and skin irritation were all reported reasons for noncompliance based on our survey results.…”

Section: Discussionmentioning

confidence: 99%

“…However, noncompliance was common, with approximately half of our cohort reporting some degree of nonadherence to therapy. To our knowledge, no other studies have reported compliance rates with postoperative NS after primary CLR, though the noncompliance rate for presurgical NAM has been reported to range from 20% to 37% 11–13 . A recent study demonstrated that the use of NS after CLR was associated with low perceived infant comfort levels as rated by caregivers 14 .…”

Section: Discussionmentioning

confidence: 99%

Use it or Lose it: Predictors of Compliance and Satisfaction With Postoperative Nasal Stent Therapy After Primary Cleft Lip Repair

Obinero,

Wei,

Tran

et al. 2024

Journal of Craniofacial Surgery

View full text Add to dashboard Cite

Objective: Postoperative nasal stents (NSs) are used to improve esthetic outcomes after primary or secondary cleft lip repair (CLR). Prior studies have utilized anthropometric measurements or physician assessment to determine the efficacy of NS, but data on caregiver-reported outcomes is limited. This study aims to assess caregiver compliance and satisfaction with postoperative NS. Methods: The authors designed a survey to collect parent-reported postoperative NS usage outcomes. Parents of infants with cleft lip (CL) who used postoperative NS after primary CLR were approached through social media to complete the survey. Data were analyzed to determine factors impacting compliance, satisfaction, and parent-reported outcomes. Results: Eighty-five parents completed the questionnaire, and 60% reported noncompliance with NS. Parents with male children (odds ratio: 5.08, P = 0.019) and patients with incomplete CL (odds ratio: 5.72, P = 0.006) were more likely to be non-compliant with NS for over a week. Complete CL and use of presurgical molding therapy were each associated with better overall experience with postoperative NS (P = 0.002 and P = 0.037), higher appearance ratings (P = 0.005 and P = 0.0008), and greater satisfaction with nostril shape after surgery (P = 0.016 and P = 0.001). Conclusions: Despite limited literature related to caregiver-reported outcomes after postoperative NS for primary CLR, the authors’ results align with what has been published regarding this topic. These results can help guide surgeons in counseling patients preoperatively. Larger, multi-institutional studies are needed to better delineate and address factors associated with compliance and satisfaction after NS therapy.

show abstract

“…This study provides a framework for establishing a comprehensive report of the burden of care of NAM therapy at a single institution within the confines of a retrospective chart review. Magyar et al (2022) approach this through a surveybased study of families who participated in NAM therapy. 63 Limited by response bias with a resultant small sample size, it defines the burden of care through the lens of caregivers.…”

Section: Financial Burdenmentioning

confidence: 99%

“…Magyar et al (2022) approach this through a surveybased study of families who participated in NAM therapy. 63 Limited by response bias with a resultant small sample size, it defines the burden of care through the lens of caregivers. Together, perspectives can be instructively combined, and future efforts should attempt to diversify data sources to introduce a global perspective on the barriers to NAM therapy.…”

Section: Financial Burdenmentioning

confidence: 99%

The Burden of Care of Nasoalveolar Molding: An Institutional Experience

Alfonso,

Park,

Kalra

et al. 2024

Journal of Craniofacial Surgery

View full text Add to dashboard Cite

Nasoalveolar molding (NAM) is an early presurgical intervention to facilitate primary cleft lip repair by reducing cleft severity and improving labial and nasal form. However, it continues to be associated with the burden of care that influences access and completion of therapy. The authors, therefore, aim to determine the burden of care of NAM therapy for families seeking treatment at a high-volume urban cleft center. A retrospective study of all patients undergoing primary cleft repair between 2012 and 2020 was performed. Patients were grouped based on whether or not NAM therapy was offered. Variables including physical, psychosocial, and financial factors were assessed. Two hundred and thirty patients underwent primary cleft repair between 2012 and 2020. Of these, 176 patients were indicated for NAM, with 4% discontinuing, and 54 patients did not undergo NAM. The 169 patients who completed NAM had a mean duration of treatment of 13.6±8.8 wks consisting of 15±6 scheduled NAM adjustment visits and 1±1 unscheduled visit made urgently to assess caregiver concerns. The mean travel distance was 28.6±37.1 miles. Eighty-four percent of caregivers were married, and 16% did not have English as a primary language. Though 57% had private insurance, 43% of patients received charity support for their treatment. NAM is a finite presurgical intervention that requires caregivers to participate in patient care for approximately three months of their early life. The decision to pursue NAM should be considered alongside the burden of care for caregivers to complete treatment.

show abstract

The Burden of Care in Nasoalveolar Molding Treatment in Cleft Patients

Cited by 9 publications

References 16 publications

Caregivers’ Experience with Lip Taping as a Presurgical Orthopedic Treatment for Cleft Lip and Palate Defects

Caregivers’ Experience with Lip Taping as a Presurgical Orthopedic Treatment for Cleft Lip and Palate Defects

Use it or Lose it: Predictors of Compliance and Satisfaction With Postoperative Nasal Stent Therapy After Primary Cleft Lip Repair

The Burden of Care of Nasoalveolar Molding: An Institutional Experience

Contact Info

Product

Resources

About