An Overview of Timeline of Interventions in the Continuum of Cleft Lip and Palate Care

Yates, David M.; Allareddy, Veerasathpurush; Caplin, Jennifer; Yadav, Sumit; Markiewicz, Michael R.

doi:10.1016/j.coms.2020.01.001

Cited by 28 publications

(30 citation statements)

References 49 publications

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“…Care timelines for patients with CL and CP are well documented (American Cleft Palate-Craniofacial Association, 2018; Yates et al, 2020). Establishing early connection with a care team is beneficial in part because presurgical treatments such as nasoalveolar molding (NAM) are often initiated in the first few weeks of life and have the potential to improve nasal symmetry (Abbott & Meara, 2012; Yates et al, 2020). Past research has shown that marginalized patient populations are less likely to pursue NAM (Kimia et al, 2020) and are more likely to miss appointments (Lynn et al, 2018).…”

Section: Discussionmentioning

confidence: 99%

Reduced Socioeconomic Disparities in Cleft Care After Implementing a Cleft Nurse Navigator Program

Wagner

Zimmerman

Barrero

et al. 2021

The Cleft Palate Craniofacial Journal

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Objective: To evaluate the impact of a Cleft Nurse Navigator (CNN) program on care for patients with cleft lip and cleft palate and assess the programs efficacy to reduce existing socioeconomic disparities in care. Design: Retrospective review and outcomes analysis (n = 739). Setting: Academic tertiary care center. Patients: All patients presenting with cleft lip and/or cleft palate (CL/P) born between May 2009 and November 2019 with exclusions for atypical clefts, submucous cleft palates, international adoption, and very late presentation (after 250 days of life). Interventions: Multidisciplinary care coordination program facilitated by the CNN. Main Outcome Measures: Patient age at first outpatient appointment and age at surgery, reported feeding issues, weight gain, and patient-cleft team communications. Results: After CNN implementation, median age at outpatient appointment decreased from 20 to 16 days ( P = .021), volume of patient-cleft team communications increased from 1.5 to 2.8 ( P < .001), and frequency of reported feeding concerns decreased (50% to 35%; P < .001). In the pre-CNN cohort, nonwhite and publicly insured patients experienced delays in first outpatient appointment ( P < .001), cleft lip repair ( P < .011), and cleft palate repair ( P < .019) compared to white and privately insured patients, respectively. In the post-CNN cohort, there were no significant differences in first appointment timing by race nor surgical timing on the basis of racial identity nor insurance type. Conclusions: A variety of factors lead to delays in cleft care for marginalized patient populations. These findings suggest that a CNN can reduce disparities of access and communication and improve early feeding in at-risk cohorts.

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Section: Discussionmentioning

confidence: 99%

Reduced Socioeconomic Disparities in Cleft Care After Implementing a Cleft Nurse Navigator Program

Wagner

Zimmerman

Barrero

et al. 2021

The Cleft Palate Craniofacial Journal

View full text Add to dashboard Cite

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“…Furthermore, a continuum of treatments that first repair the lip at 3 to 6 months of age is conducted alongside the orofacial and psychosocial development of children with CL/P, and the comprehensive phase of treatment is completed during the late adolescent years. 21 Similarly, the children investigated in the present survey were in the middle of the final treatment. As such, even though parents may be informed that their child's aesthetic issues will be solved in the future, it is conjectured that they will still be concerned about the future of their children as they are faced with their currently imperfect appearance.…”

Section: Discussionmentioning

confidence: 71%

“…Although both CLP and CL represent an external malformation that can be recognised at a glance, results indicate that simply recognising a physical feature of CL influences parents’ perspectives. Furthermore, a continuum of treatments that first repair the lip at 3 to 6 months of age is conducted alongside the orofacial and psychosocial development of children with CL/P, and the comprehensive phase of treatment is completed during the late adolescent years 21 . Similarly, the children investigated in the present survey were in the middle of the final treatment.…”

Section: Discussionmentioning

confidence: 99%

Differences in specific concerns perceived by parents of children with cleft lip and/or palate based on the types of cleft

Niinomi

Ueki

Fujita

et al. 2021

Int J Paed Dentistry

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With a worldwide prevalence of approximately 9.92 per 10,000 newborn births, 1 cleft lip and/or cleft palate (CL/P), which includes cleft lip only (CL), cleft lip and palate (CLP), and cleft palate only (CP), is one of the most common congenital orofacial anomalies in humans. 2 Japan reports the highest prevalence worldwide (20.4 per 10,000 births). 1 Children with CL/P experience effects on their speech, hearing, appearance, and cognition that can lead to long-lasting adverse outcomes for their health and social integration. 3 Recent research into the psychological influence of these adversities, such as behavioural problems,

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“…It might be possible for the Pompe disease girl infant to receive the surgery later, after receiving more courses of enzyme replacement therapy. However, many studies suggested to perform primary cleft lip repair between the ages of 3 and 6 months since it is proper timing, allows subsequent treatments to perform and also for better establishing lip competence ( 20 , 21 ). Concerns of early surgical intervention in high-risk patients may be raised; however, with early enzyme replacement therapy in our case, cardiac and other organ functions seem to be tolerable to surgical stress and anesthetics.…”

Section: Discussionmentioning

confidence: 99%

Case Report: Anesthetic Management and Electrical Cardiometry as Intensive Hemodynamic Monitoring During Cheiloplasty in an Infant With Enzyme-Replaced Pompe Disease and Preserved Preoperative Cardiac Function

et al. 2021

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Introduction: Pompe disease is caused by deficiency of the lysosomal enzyme acid α-glucosidase, which results in cardiac and muscular complications that can jeopardize perioperative outcomes. We report a 4-month-old infant with Pompe disease receiving cheiloplasty under general anesthesia with the aid of peripheral nerve blocks and intensive hemodynamic monitoring.Case Description: This case report describes a 4-month-old full-term Taiwanese female infant who presented with left unilateral cleft lip and palate in the prenatal examination. She was diagnosed with infantile-onset Pompe disease after acidic α-glucosidase (GAA) gene sequencing. She also received enzyme replacement therapy (ERT) 15 days after birth and regular ERT every other week. Cheiloplasty was performed under general anesthesia uneventfully, and peripheral nerve blocks were adopted for analgesia. Intensive hemodynamic monitoring using electrical cardiometry technology (ICON®) and pulse contour analysis (FloTrac system) were applied during the operation. No adverse effects were observed, and the wound healed well. Therefore, the patient was discharged 4 days after surgery.Conclusion: With the availability of ERT, severe organ dysfunction in infantile-onset Pompe disease patients is no longer common. However, moderate cardiac depression can still occur while increasing inspiratory pressure and deepening the anesthesia level despite a normal preoperative echocardiogram report. Therefore, careful, gradual titration is desirable. Furthermore, electrical cardiometry can detect hemodynamic changes more instantaneously and reliably than pulse contour analysis. In addition, we suggest taking advantage of the peripheral nerve block as a part of balanced anesthesia to alleviate the cardiac suppression caused by general anesthesia.

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An Overview of Timeline of Interventions in the Continuum of Cleft Lip and Palate Care

Cited by 28 publications

References 49 publications

Reduced Socioeconomic Disparities in Cleft Care After Implementing a Cleft Nurse Navigator Program

Reduced Socioeconomic Disparities in Cleft Care After Implementing a Cleft Nurse Navigator Program

Differences in specific concerns perceived by parents of children with cleft lip and/or palate based on the types of cleft

Case Report: Anesthetic Management and Electrical Cardiometry as Intensive Hemodynamic Monitoring During Cheiloplasty in an Infant With Enzyme-Replaced Pompe Disease and Preserved Preoperative Cardiac Function

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