Sociodemographic Factors Predict Long-Term Attrition from Multidisciplinary Cleft Clinic.

OBJECTIVE: Identify and describe factors associated with retention and attrition of patients during longitudinal follow-up at multidisciplinary cleft clinic. DESIGN: Retrospective cohort study. SETTING: Single, tertiary care center. PATIENTS, PARTICIPANTS: Patients born between 1995 and 2007 with a diagnosis of cleft palate with or without cleft lip attending multidisciplinary cleft clinic. INTERVENTIONS: None tested, observational study. MAIN OUTCOME MEASURE(S): Age at last clinical appointment with a multidisciplinary cleft team provider. Attrition was defined as absence of an outpatient appointment following 15 years of age. RESULTS: Six hundred seventy-eight patients were included. The average age at last appointment across the entire cohort was 13.1 years (IQR 6.6-17.2). Patients who were Black (HR 1.60, 95% CI 1.10-2.32, p = 0.014) and other races (HR 1.90, 95% CI 1.22-2.98, p = 0.004) were more likely to be lost to follow-up compared to white patients. Publicly insured patients were more likely to experience attrition than those who were privately insured (HR 1.30, 95% CI 1.03-1.65, p = 0.030). Estimated income was not significantly associated with length of follow-up (p = 0.259). Those whose residence was in the fourth quartile of driving distance from our center experienced loss to follow-up significantly more than those who lived the closest (HR 2.04, 95% CI 1.50-2.78, p < 0.001). CONCLUSIONS: There is a high degree of follow-up attrition among patients with cleft lip and palate. Race, insurance status, and driving distance to our center were associated with attrition in a large, retrospective cohort of patients who have reached the age of cleft clinic graduation.

Integration of the Cleft-Q Patient Reported Outcome Tool into a Multidisciplinary Cleft and Craniofacial Clinic: A Proof of Concept.

SUMMARY: Implementation of patient reported outcome (PRO) tools has increased internationally in a variety of clinical settings, with emerging evidence suggesting benefits for patient satisfaction, improved patient-provider communication, and management of chronic conditions. However, integrating PROs into clinical workflow remains a barrier to implementation, with common challenges including patient completion, provider review of results, and future accessibility of data. Cleft lip and/or palate (CL/P) presents with a variety of aesthetic, functional, and psychosocial sequelae optimally managed by a multidisciplinary team, and Cleft-Q is a validated twelve-module PRO that captures patient perception in these domains. Given the emerging proven benefits of using PROs in a clinical setting, the authors integrated the Cleft-Q PRO at a multidisciplinary cleft and craniofacial clinic at a large, urban, tertiary care center. We collaborated with our institution's EHR Clinical Informatics Team to automatically identify eligible CL/P patients and generate the Cleft-Q PRO prior to weekly multidisciplinary cleft and craniofacial clinic days. Patient results were automatically scored, compared to age-based normative data, and populated into the EHR patient note. Cleft-Q results were viewed by clinicians during patient visits to initiate module-specific discussion in relation to patient age-based normative results. Patient-specific Cleft-Q data were also discussed during multidisciplinary cleft and craniofacial team discussions to aid in clinical decision making. This experience may have applicability to other PRO tools in plastic surgery and other medical specialties where integrating PROs may yield superior patient experience and outcomes.

Characterizing Interventions and Family Assistance of a Nurse Navigation Program in Orofacial Cleft Care.

OBJECTIVE: Characterize the interventions and assistance employed by a cleft nurse navigator (CNN) which have mediated improvement in care equity at our institution. DESIGN: Retrospective study. SETTING: Academic tertiary care center. PATIENTS, PARTICIPANTS: Patients presenting with cleft lip and/or cleft palate presenting between August 2020 and August 2021 with exclusions for syndromic diagnosis, Pierre-Robin sequence, late (> 6 months) presentation, and prior cleft surgery at outside institutions. INTERVENTIONS: Multidisciplinary cleft nurse navigator program. MAIN OUTCOME MEASURE(S): Family interactions with the CNN by phone, text, and email across the first year of life including feeding support, nasoalveolar molding (NAM) assistance, appointment scheduling, financial assistance, addressing perioperative concerns, and facilitating physician consults. Patient weight and surgical timing were also recorded. RESULTS: Sixty-nine patients were included with a total of 639 interactions between the CNN and families. Scheduling support (30%), addressing perioperative concerns (22%), and feeding support (20%) were the most common interactions. Feeding support and NAM assistance were heavily distributed in the first 3 months of life compared to after 3 months (P < .001). Median age at first contact was 1 week (range: 22 weeks gestation-14 weeks). There was no difference in the proportion of families receiving feeding support, NAM assistance, or scheduling assistance based on insurance status or race (P > .05 for all). CONCLUSIONS: Scheduling assistance, addressing perioperative concerns, and feeding support are the predominant methods by which the CNN interacts with and assists families of patients with cleft conditions. CNN service distribution is largely equitable between demographic groups.

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

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.

What is the Impact of Prenatal Counseling on Postnatal Cleft Treatment? Multidisciplinary Pathway for Prenatal Orofacial Cleft Care.

ABSTRACT: In the pediatric general surgery literature, it has been shown that prenatal diagnosis of a congenital anomaly is an independent predictor of parental psychological distress. Surgical prenatal counseling can decrease parental anxiety by helping families understand the surgical needs and potential outcomes of their infant. In this retrospective analysis (n = 440), the authors sought to present our care pathway for prenatally diagnosed cleft lip and palate (CL/P) and explore the impact of cleft lip and palate-specific prenatal counseling on patient care by comparing the timing of clinical and surgical care between a cohort of patients who received prenatal CL/P consultation and a cohort of patients only seen postnatally. The authors hypothesize that our multidisciplinary prenatal care intervention is associated with earlier postnatal clinic visits and surgical repair. The care of all patients whose mother's presented for prenatal CL/P consultation (prenatal cohort, n = 118) was compared to all new CL/P patients without prenatal consultation at our institution (postnatal cohort, n = 322) from January 2015 through August 2019. 81.4% (n = 96) of the prenatal cohort returned for care postnatally while 2 pregnancies were interrupted, four neonates died, and 15 patients did not return for care. Prenatal consultation was associated with earlier postnatal clinic appointments (P < 0.001) as well as a shorter time to CL repair in patients with CL only (P = 0.002) and CLP (P = 0.047). Our described pre- and postnatal CL/P pathway is a multidisciplinary model associated with high retention rates from the prenatal period through complete surgical repair.

A Sustainable Model for Patient follow-up following an International Cleft Mission: A Proof of Concept.

PURPOSE: Patient follow-up after cleft missions is imperative if we are to critically assess the quality of care provided in these settings. The adoption of mobile telephones among disadvantaged families abroad may enable such an undertaking in a cost-effective manner. This project aimed to assess the efficacy of cellular phone-based follow-up in a developing country following a cleft mission to Thailand. METHODS: Changing Children's Lives Inc. performed a cleft surgical mission to Udon Thani, Thailand, in January 2013. Telephone numbers collected at that time were used to survey the patients or their parents 1.5 years postoperatively. RESULTS: Of the 56 patients who underwent cleft lip and/or palate surgery during the mission, more than 50% ( n = 30, 54%) were reachable by telephone; all chose to participate in the study. The cost for families was U.S. $124.92 (56.15); 26 families (87%) believed their money was well spent. Follow-up care was received by 22 (73%) patients, and all but one family ( n = 29, 97%) felt that their child received all of the medical care and support required. All families ( N = 30) would recommend similar cleft care to a friend. Of the patients younger than 18 years of age ( n = 24, 80%), 20 (80%) families found their child more comfortable interacting with peers, more comfortable interacting with adults, and more confident postoperatively. CONCLUSION: In one month, a survey response rate of more than 50% was obtained by leveraging the increased adoption of mobile phones in rural settings. Nearly all patients/families treated during the cleft mission were satisfied with the care that they received.

A Quantitative Analysis of OnabotulinumtoxinA, AbobotulinumtoxinA, and IncobotulinumtoxinA: A Randomized, Double-Blind, Prospective Clinical Trial of Comparative Dynamic Strain Reduction.

BACKGROUND: U.S. Food and Drug Administration-approved formulations of botulinum toxin include onabotulinumtoxinA (Botox; Allergan, Inc., Irvine, Calif.), abobotulinumtoxinA (Dysport; Galderma Pharma S.A., Lausanne, Switzerland), and incobotulinumtoxinA (Xeomin; Merz Pharmaceuticals GmbH, Frankfurt am Main, Germany). This study uses digital image correlation to compare dynamic strain reduction between available neurotoxins. METHODS: Seventy-three treatment-naive female patients aged were randomized to injection with onabotulinumtoxinA (20 units), abobotulinumtoxinA (60 units), or incobotulinumtoxinA (20 units) in the glabella. Imaging was conducted at 4, 14, and 90 days after injection. Change in average dynamic strain of the glabella was compared using ANOVA. RESULTS: At day 4, there was a 42.1 percent strain reduction in the onabotulinumtoxinA group, a 39.4 percent strain reduction in the abobotulinumtoxinA group, and a 19.8 percent strain reduction in the incobotulinumtoxinA group (onabotulinumtoxinA versus abobotulinumtoxinA, p = 0.77; onabotulinumtoxinA versus incobotulinumtoxinA, p = 0.02; and abobotulinumtoxinA versus incobotulinumtoxinA, p = 0.04). At day 14, there was a 66.1 percent strain reduction in the onabotulinumtoxinA group, a 51.4 percent strain reduction in the abobotulinumtoxinA group, and a 42.8 percent strain reduction in the incobotulinumtoxinA group (onabotulinumtoxinA versus abobotulinumtoxinA, p = 0.14; onabotulinumtoxinA versus incobotulinumtoxinA, p = 0.02; and abobotulinumtoxinA versus incobotulinumtoxinA, p = 0.36). At day 90, there was a 43.5 percent strain reduction in the onabotulinumtoxinA group, a 38.4 percent strain reduction in the abobotulinumtoxinA group, and a 25.3 percent strain reduction in the incobotulinumtoxinA group (onabotulinumtoxinA versus abobotulinumtoxinA, p = 0.66; onabotulinumtoxinA versus incobotulinumtoxinA, p = 0.12; and abobotulinumtoxinA versus incobotulinumtoxinA, p = 0.24). CONCLUSIONS: Using digital image correlation, the tested neuromodulators do not have equivalent strain reduction in the glabella at the doses used. These results confirm assertions of noninterchangeability. CLINICAL QUESTION/LEVEL OF EVIDENCE: Therapeutic, II.

Patient Perceived Benefit in Facial Aesthetic Procedures: FACE-Q as a Tool to Study Botulinum Toxin Injection Outcomes.

BACKGROUND: There are numerous methods of assessing patient satisfaction with botulinum toxin type A neuromodulation of the glabellar rhytids. As the use of aesthetic neuromodulation increases both in breadth and number of procedures, there is a need for more comprehensive tools to evaluate patient-reported outcomes. The FACE-Q is a recently validated patient-reported outcome instrument that can be used to measure patient perceptions of botulinum toxin type A neuromodulation. OBJECTIVES: This study used the FACE-Q to assess patient satisfaction following botulinum toxin type A neuromodulation of the glabellar rhytids. METHODS: 57 female patients completed the FACE-Q, a survey that evaluates patients' satisfaction with their facial appearance. After this baseline survey, the patients received injections of one of onabotulinumtoxinA (Botox, Allergan, Dublin, Ireland), abobotulinumtoxinA (Dysport, Galderma, Lausanne, Switzerland), or incobotulinumtoxinA (Xeomin, Merz Pharmaceuticals, Frankfurt am Main, Germany) in the glabella. Two weeks post-injection, the patients completed the FACE-Q again. The percentage changes in patient responses were tabulated to determine how neuromodulation affects patient satisfaction with their facial appearance. The percentage changes for each of the neurotoxin groups were compared to determine if patient satisfaction with neuromodulation varies with the type of neurotoxin. RESULTS: Patient satisfaction with their overall facial appearance increased by 28% following neuromodulation. Patients stated that they believe they look an average of 5.6 years younger post-neuromodulation. There were no significant differences among the treatment groups. CONCLUSIONS: The FACE-Q demonstrates that patients are more satisfied by their overall facial appearance and age appearance following neuromodulation of their glabellar rhytids. Patients are equally satisfied with the improvement of their facial appearance regardless of which neurotoxin they received. LEVEL OF EVIDENCE 2: Therapeutic.