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1.
Cleft Palate Craniofac J ; : 10556656231226070, 2024 Jan 09.
Article in English | MEDLINE | ID: mdl-38196266

ABSTRACT

OBJECTIVE: To examine whether neighborhood disadvantage impacts length of follow-up, interventions, and outcomes for patients with cleft palate. DESIGN: Retrospective cohort. SETTING: Cleft Palate Craniofacial Institute Database at St. Louis Children's Hospital. PATIENTS/PARTICIPANTS: Patients with cleft palate following in St. Louis Children's Hospital Cleft Palate Multidisciplinary Team Clinic. INTERVENTIONS: Primary palatoplasty between 2012-2017. Patients were divided into quartiles across area deprivation index (ADI) and social vulnerability index (SVI), two validated, composite metrics of neighborhood disadvantage, to examine whether living in neighborhoods from different deprivation quartiles impacts outcomes of interest. MAIN OUTCOME MEASURE: Follow-up through age 5, surgeries and surgical complications, speech, developmental, and behavioral outcomes. RESULTS: 205 patients were included. 39% of patients belonged to the most deprived ADI quartile, while 15% belonged to the most vulnerable SVI quartile. There were no differences between ADI or SVI quartiles in number of operations received (p ≥ 0.40). Patients in the most deprived ADI quartile were significantly more likely to have speech/language concerns (OR 2.32, 95% CI [1.20-4.89], p = 0.01). Being in a more vulnerable SVI quartile was associated with developmental delay (OR 2.29, 95% CI [1.04-5.15], p = 0.04). ADI and SVI quartile did not impact risk of loss to follow-up in the isolated and combined cleft lip and palate subgroups (p ≥ 0.21). CONCLUSIONS: Neighborhood disadvantage impacts speech and developmental outcomes in patients with cleft palate despite comparable length of follow-up in multidisciplinary team clinic.

2.
Cleft Palate Craniofac J ; 61(1): 61-67, 2024 01.
Article in English | MEDLINE | ID: mdl-35912430

ABSTRACT

PURPOSE: A palatal fistula is an adverse outcome of cleft palate repair. It is unknown if a palatal fistula will influence velopharyngeal closure, even after repair of the fistula. This study determines the effect of a soft palate fistula on the risk of developing velopharyngeal insufficiency. METHODS: A retrospective chart review was conducted on patients who underwent primary cleft palate repair between 2000 and 2015, with complete records at 4 years of age. Fistulae involving the secondary palate following primary palatoplasty were classified as the soft or hard palate. A forced-entry multivariate logistic regression model was built to detect predictors of velopharyngeal dysfunction. RESULTS: Records of 329 patients were analyzed with a mean follow-up of 8.7 years. A palatal fistula was identified in 89/329 patients (27%) and 29/329 patients (9%) underwent an independent fistula repair. Of the patients with fistula, 44% were located in the hard palate only and 56% had soft palate involvement. Compared to patients without a fistula, rates of velopharyngeal dysfunction were significantly higher in patients with a fistula involving the soft palate (OR 3.875, CI: 1.964-7.648, P < .001) but not in patients with a hard palate fistula (OR 1.140, CI: 0.497-2.613, P = .757). Veau class, age at primary repair, and syndromic status were not significant predictors of VPI (0.128≤P ≤ .975). CONCLUSIONS: A palatal fistula involving the soft palate is a significant predictor for development of velopharyngeal dysfunction after primary palatoplasty. Surgical intervention, at the time of fistula repair, to add vascularized tissue may be indicated to prophylactically decrease the risk of velopharyngeal dysfunction.


Subject(s)
Cleft Palate , Fistula , Velopharyngeal Insufficiency , Humans , Cleft Palate/surgery , Retrospective Studies , Treatment Outcome , Fistula/etiology , Palate, Hard/surgery , Palate, Soft/surgery , Velopharyngeal Insufficiency/etiology , Velopharyngeal Insufficiency/surgery
3.
Cleft Palate Craniofac J ; 61(1): 138-143, 2024 01.
Article in English | MEDLINE | ID: mdl-36128842

ABSTRACT

To describe the process of developing a craniosynostosis decision aid.We conducted a mixed-methods exploratory study between August 2019 and March 2020 to develop a decision aid about surgical treatment for single suture craniosynostosis.A single tertiary care academic children's hospital.The decision aid development team consisted of surgeons, research fellows, a clinical nurse practitioner, clinical researchers with expertise in decision science, and a university-affiliated design school. Qualitative interviews (N = 5) were performed with families, clinicians (N = 2), and a helmeting orthotist to provide feedback on decision aid content, format, and usability.After cycles of revisions and iterations, 3 related decision aids were designed and approved by the marketing arm of our institution. Distinct booklets were created to enable focused discussion of treatment options for the 3 major types of single suture craniosynostosis (sagittal, metopic, unicoronal).Three decision aids representing the 3 most common forms of single suture craniosynostosis were developed. Clinicians found the decision aids could help facilitate discussions about families' treatment preferences, goals, and concerns.We developed a customizable decision aid for single suture craniosynostosis treatment options. This tool lays the foundation for shared decision-making by assessing family preferences and providing clear, concise, and credible information regarding surgical treatment. Future research can evaluate this tool's impact on patient-clinician discussions about families' goals and preferences for treatment.


Subject(s)
Craniosynostoses , Child , Humans , Craniosynostoses/surgery , Decision Support Techniques
4.
Cleft Palate Craniofac J ; : 10556656231190043, 2023 Jul 24.
Article in English | MEDLINE | ID: mdl-37488963

ABSTRACT

OBJECTIVE: Apply thematic analysis of online discussion boards to characterize families' experiences and concerns regarding craniosynostosis diagnoses to aid physicians in tailoring care to families. DESIGN: Grounded theory-based qualitative analysis. SETTING: Discussion boards related to craniosynostosis identified via Google and Yahoo. PATIENTS/PARTICIPANTS: Posts about craniosynostosis between 2017-2022. INTERVENTIONS: Thematic analysis was performed using three rounds of coding. Post features including author type and use of technical language were examined. MAIN OUTCOME MEASURE: Overarching themes emerging from analysis of posts, with forums analyzed until sufficient thematic repetition was observed. RESULTS: 366 posts from 4 websites by 290 unique users were included. Parents of patients with craniosynostosis wrote 59% of posts while patients wrote 4%. Five selective codes were identified: 1) Building Community, 2) Diagnosis/Evaluation, 3) Treatment, 4) Outcomes, and 5) Emotional Concerns. Building Community was the most assigned code (85% of posts). 71% of parents' posts expressing emotional concerns expressed negative emotions, commonly regarding anxiety about diagnosis (71%), frustration about doctors' responses (21%), or negative reactions to online search results (17%). 88% of patients' posts expressed positive emotions, discussing positive long-term outcomes. Concerns that may guide physicians included anxiety about delayed diagnosis, difficulty distinguishing postpartum head shape changes from craniosynostosis, and difficulty finding a care team. CONCLUSIONS: Online discussion boards allow families of patients with craniosynostosis to share experiences and find community. Improving communication between surgeons, pediatricians, and families about timing of evaluation and revising online information about this condition may ameliorate some anxiety associated with this diagnosis.

5.
Cleft Palate Craniofac J ; : 10556656231205974, 2023 Oct 06.
Article in English | MEDLINE | ID: mdl-37801491

ABSTRACT

OBJECTIVE: Optimal Outcomes Reporting was recently introduced to categorize outcomes after cleft palate repair. We seek to propose an expanded version of Optimal Outcomes Reporting and to determine if correlation exists between the expanded outcomes and persistence with team care follow-up through age 9. DESIGN: Retrospective cohort study. SETTING: Cleft team at large pediatric hospital. PATIENTS: Patients with isolated nonsyndromic cleft palate (n = 83) born from 2001-2012. MAIN OUTCOME MEASURES: Patients who continued to present at age 5 or greater were assessed for optimal outcomes. Optimal outcomes were: surgery - no fistula or velopharyngeal insufficiency; otolaryngology - no obstructive sleep apnea or signs of chronic middle ear disease; audiology - no hearing loss; speech-language pathology - no assessed need for speech therapy. RESULTS: Of the 83 patients identified, 41 were assessed for optimal outcomes. Optimal outcome in any discipline was not associated with follow-up through age 9 (0.112 ≤ p ≤ 0.999). For all disciplines, the group with suboptimal outcomes had a higher proportion of patients from geographic areas in the most disadvantaged quartile of social vulnerability index, with the strongest association in the group with suboptimal speech outcome (OR 6.75, 95% CI 0.841-81.1). CONCLUSIONS: Optimal outcomes and retention in team clinic were not statistically significantly associated, but clinically relevant associations were found between patients in the most disadvantaged quartile of social vulnerability and their outcomes. A patient-centered approach, including caregiver education about long-term care for patients with cleft palate, would allow for enhanced resource utilization to improve retention for patients of concern.

6.
Cleft Palate Craniofac J ; 59(4): 462-474, 2022 Apr.
Article in English | MEDLINE | ID: mdl-33882703

ABSTRACT

OBJECTIVE: The aim of this systematic review and meta-analysis was to investigate long-term treatment effects of nasoalveolar molding (NAM) in patients with unilateral cleft lip and palate (UCLP). DESIGN: Included manuscripts met the following criteria: (1) involved patients with UCLP who received NAM; (2) included comparison group(s) who either received non-NAM passive presurgical infant orthopedic appliances (PSIO) or who did not receive any PSIO; (3) reported at least one objective or validated measure of nasolabial, craniofacial, or palatal form; and (4) had patient follow-up beyond 4 years of age. RESULTS: A total of 12 studies were included in this review. Meta-analyses were possible for Asher-McDade parameters and cephalometric measurements. Compared to patients who did not receive any PSIO, those who underwent NAM therapy were more likely to have good to excellent frontal nasal form (Risk ratio: 2.4, 95% CI: 1.24-3.68) and vermillion border (Risk ratio: 1.8, 95% CI: 1.19-2.71). However, there were no statistically significant differences in cephalometric measurements between these groups. Additionally, there were no statistically significant differences between patients receiving NAM versus non-NAM PSIO. There was insufficient evidence to determine the impact of NAM on dental arch development. CONCLUSIONS: The preponderance of evidence in this review suggests that NAM produces benefits in nasolabial aesthetic form when compared with no appliance-based presurgical treatment. However, there is insufficient evidence to conclude whether NAM produces such benefits when compared with other passive PSIOs.


Subject(s)
Cleft Lip , Cleft Palate , Cleft Lip/surgery , Cleft Palate/surgery , Esthetics, Dental , Humans , Infant , Nasoalveolar Molding , Nose/surgery , Treatment Outcome
7.
Cleft Palate Craniofac J ; 59(11): 1428-1432, 2022 11.
Article in English | MEDLINE | ID: mdl-34617484

ABSTRACT

BACKGROUND: The financial burden of cleft-craniofacial team care is substantial, and high costs can hinder successful completion of team care. SOLUTION: Collaboration with multiple stakeholders including providers, insurers, and patient guardians, as well as hospital administrators, is critical to increase patient retention and improve final clinical outcomes. WHAT WE DO THAT IS NEW: At our cleft and craniofacial center, charges for a team care visit fall into one of three categories-hospital fees, professional fees, or external fees. There are four types of hospital fees depending on (1) whether the patient is new or returning, and (2) whether the patient saw ≤4 or ≥5 providers. To further elucidate the financial burden (out-of-pocket costs) directly borne by families of children with cleft lip and/or palate, we conducted a retrospective review of billing records of team care visits made between September 2019 and March 2020. Out-of-pocket costs for a single team care visit (on a commercial insurance plan) ranged from $4 to approximately $1220 and had a median (IQR) of $445 ($118, $749).


Subject(s)
Cleft Lip , Cleft Palate , Child , Cleft Lip/therapy , Cleft Palate/therapy , Fees and Charges , Hospitals, Pediatric , Humans , Patient Care Team , Retrospective Studies
8.
Cleft Palate Craniofac J ; : 10556656221129978, 2022 Sep 29.
Article in English | MEDLINE | ID: mdl-36177519

ABSTRACT

OBJECTIVE: Lambdoid craniosynostosis affects approximately 1 in 33 000 live births per year, and surgical correction is often sought in order to achieve normocephaly and allow for adequate brain growth. However, the effects of lambdoid synostosis and its treatment on cognitive development are unknown. DESIGN: Systematic review and meta-analysis. PATIENTS, PARTICIPANTS: A systematic review of Ovid Medline, Embase, Web of Science, Scopus, Cochrane Central Register of Controlled Trials, and Clinicaltrials.gov was conducted in January 2022. Included studies assessed cognitive development of patients with nonsyndromic unilateral lambdoid craniosynostosis. MAIN OUTCOME MEASURES: Results of developmental tests were compared to normative data or controls to generate Hedges' g for meta-analysis. RESULTS: Nine studies met the inclusion criteria. Meta-analysis of 3 studies describing general cognition showed that cases scored significantly lower than their peers, but within 1 standard deviation (g = 0.37, 95% CI [-0.64, -0.10], P = .01). Meta-analysis of verbal and psychomotor development showed no significant differences in children with lambdoid synostosis. Studies were of fair quality and had moderate-to-high heterogeneity. CONCLUSIONS: Patients with lambdoid craniosynostosis may score slightly below average on tests of general cognition in comparison to normal controls, but results in other domains are variable. Analyses were limited by small sample sizes. Multidisciplinary care and involvement of a child psychologist may be helpful in identifying areas of concern and providing adequate scholastic support. Further research recruiting larger cohorts will be necessary to confirm these findings and extend them to other developmental domains such as attention and executive function.

9.
Am J Orthod Dentofacial Orthop ; 161(6): 820-828.e1, 2022 Jun.
Article in English | MEDLINE | ID: mdl-35219554

ABSTRACT

INTRODUCTION: Alveolar bone grafting (ABG) delay can lead to suboptimal outcomes. This study seeks to categorize reasons patients with cleft lip and palate have no record of ABG or who underwent later than typical ABG (≥13 years). METHODS: At a single tertiary care center, a retrospective review was performed of all patients with unilateral, complete cleft lip and palate, born 1998-2005. Database query identified which patients had timely, late, or no record of ABG. The retrospective cohort study was performed to categorize ABG delay or absence of recorded ABG. RESULTS: Of 135 participants, 82 (61%) had timely, 8 (6%) had late, and 45 (33%) had no record of ABG. The primary factor for late ABG was noncompliance or refusal (n = 5 of 8, 63%), comorbidity or medical complexity (n = 1 of 8, 13%), orthodontic unpreparedness (n = 1 of 8, 13%), or inaccurate prior assessment of alveolar sufficiency (n = 1 of 8, 13%). The primary factor for ABG record absence was loss to follow-up (n = 40 of 45, 89%), noncompliance or refusal (n = 3 of 45, 7%), comorbidity or medical complexity (n = 1 of 45, 2%), or orthodontic unpreparedness (n = 1 of 45, 2%). Racial majority (White, Asian) patients received preferred care (timely ABG or medically appropriate absence or delay) at a significantly higher rate (67%) than underrepresented minorities (African American, Hispanic, Native American, other) (35%, P = 0.016). Families with private insurance and those who were self-pay received preferred care at a significantly higher rate (77%) than families with Medicaid (42%) (P <0.001). CONCLUSIONS: The high number of patients lost to follow-up highlights the impact of poor retention on ABG completion. Possible health disparities based on race and insurance status warrant clinical focus.


Subject(s)
Alveolar Bone Grafting , Cleft Lip , Cleft Palate , Bone Transplantation , Cleft Lip/surgery , Cleft Palate/surgery , Cohort Studies , Humans , Insurance Coverage , Insurance, Health/classification , Patient Compliance , Race Factors , Retrospective Studies , Tertiary Care Centers , Treatment Refusal
10.
J Craniofac Surg ; 32(2): 486-491, 2021.
Article in English | MEDLINE | ID: mdl-33704966

ABSTRACT

BACKGROUND: Nasoalveolar molding (NAM) is a widely used presurgical orthopedic device, despite disputes over its effectiveness. This study compares the outcomes after cleft lip and nose repair in patients who received NAM versus those who underwent passive alveolar molding with lip taping. METHODS: A retrospective review of patients with complete unilateral cleft lip and palate who received either NAM (n = 16) or passive molding (n = 10) treatments was conducted. Alveolar gap width was measured on maxillary casts until time of palatoplasty. Nasolabial symmetry was assessed by examining anthropometric ratios on post-operative three-dimensional photographs. Burden of care was evaluated by analyzing the number of patient appointments attended, treatment costs, and caregiver satisfaction surveys. RESULTS: No statistically significant difference existed in alveolar gap at time of initial appointment or palatoplasty, however the gap was smaller in the NAM cohort at time of lip and nose repair. No statistically significant difference existed in postsurgical heminasal width, nostril width, nostril height, labial height or nasal ala projection asymmetry between the NAM and the passive molding cohort. Patients in the NAM group attended more dental appointments and incurred higher treatment costs compared to the passive molding group. Caregivers reported high satisfaction with treatment outcomes in both cohorts. CONCLUSIONS: There were no differences between NAM and passive molding regarding postsurgical nasolabial appearance and patient satisfaction. Both treatments narrow the alveolar gap. However, NAM places a higher burden of care on families.


Subject(s)
Cleft Lip , Cleft Palate , Alveolar Process/surgery , Cleft Lip/surgery , Cleft Palate/surgery , Humans , Infant , Nasoalveolar Molding , Nose/surgery , Preoperative Care , Retrospective Studies
11.
J Craniofac Surg ; 32(2): 517-520, 2021.
Article in English | MEDLINE | ID: mdl-33704973

ABSTRACT

BACKGROUND: Several studies have illustrated the efficacy of pregabalin in decreasing postoperative opioid use in adults undergoing orthognathic surgery. We aimed to study the effects of a single dose of preoperative pregabalin on total opioid consumption after orthognathic surgery in individuals with cleft lip and palate. METHODS: This is a retrospective cohort study of consecutive patients who underwent Le Fort I midface advancement between June 2012 and July 2019. All patients had a diagnosis of cleft lip and palate. The treatment group received a 1-time preoperative dose of pregabalin; the control group did not. Total morphine milligram equivalent (MME) consumption was calculated by adding intraoperative and postoperative opioid use during admission. RESULTS: Twenty-three patients were included in this study; 12 patients received pregabalin. The pregabalin group had significantly lower total opioid consumption (total MME 70.95 MME; interquartile range [IQR]: 24.65-150.17) compared to the control group (138.00 MME; IQR: 105.00-232.48) (MU = 31.00, P = 0.031). The difference in mean pain scores in the treatment group (3.21 ±â€Š2.03) and the control group (3.71 ±â€Š2.95) was not statistically significant (P = 0.651, 95% confidence interval -1.75 to 2.75). CONCLUSIONS: A 1-time preoperative dose of pregabalin before orthognathic surgery in patients with cleft lip and palate reduced total opioid consumption during admission without increasing patient pain. A single preemptive dose of pregabalin should be considered an effective adjunct to pain management protocols in patients undergoing orthognathic surgery.


Subject(s)
Cleft Lip , Cleft Palate , Orthognathic Surgery , Adult , Analgesics, Opioid/therapeutic use , Cleft Lip/surgery , Cleft Palate/surgery , Humans , Pain, Postoperative/drug therapy , Pregabalin/therapeutic use , Retrospective Studies
12.
J Craniofac Surg ; 32(3): 931-935, 2021 May 01.
Article in English | MEDLINE | ID: mdl-33290333

ABSTRACT

BACKGROUND: This cohort study aimed to assess how age at repair affects outcomes in nonsyndromic patients with and without Robin Sequence using a national database of commercial healthcare claims. METHODS: Children under 4 years of age undergoing palatoplasty were identified in the IBM MarketScan Commercial Database based on ICD-9-CM and CPT procedure codes. They were divided into Robin and non-Robin cleft palate groups, and further divided by time of initial cleft palate repair: Robin Sequence into 2 groups: age ≤10 months or >10 months; non-Robin cleft palate into 3 groups: age ≤10 months, >10-14 months, or >14 months age. Time to cleft palate revision within each group was assessed using Cox proportional-hazard models. RESULTS: A total of 261 patients with Robin Sequence and 3046 with non-Robin cleft palate were identified. In patients with Robin, later repair was associated with decreased risk of secondary procedures compared with early repair (Hazard Ratio (HR) 0.19, 95%CI 0.09-0.39, P < 0.001). In patients with non-Robin cleft palate, decreased risk of revision compared to early repair was associated both with repair at >10-14 months (adjusted HR 0.40, 95%CI 0.31-0.52, P < 0.001) and > 14 months (adjusted HR 0.71, 95%CI 0.57-0.88, P = 0.002). Adjusting for timing of repair, patients with non-Robin cleft palate were at significantly increased risk of secondary procedure if diagnosed with failure to thrive or anemia in the 30 days prior to palatoplasty. CONCLUSIONS: In patients with and without Robin sequence, cleft palate repair at or before 10 months of age was associated with higher risk for secondary procedures.


Subject(s)
Cleft Palate , Pierre Robin Syndrome , Child , Child, Preschool , Cleft Palate/surgery , Cohort Studies , Humans , Infant , Pierre Robin Syndrome/surgery , Retrospective Studies , Treatment Outcome
13.
Cleft Palate Craniofac J ; 58(1): 114-117, 2021 01.
Article in English | MEDLINE | ID: mdl-33319604

ABSTRACT

BACKGROUND: Multidisciplinary cleft care protocols commonly do not incorporate family needs, concerns, and preferences. SOLUTION: A family-centered model would incorporate family needs, concerns, and preferences with a view toward lessening burden of care while achieving outcomes important to families. WHAT WE DO: Our Intake Form helps us adapt visits to better meet families' needs, and our Dashboard enables Team Coordinators to direct efficient patient flows, lessening wait times and care burden.


Subject(s)
Cleft Lip , Cleft Palate , Ambulatory Care , Cleft Palate/therapy , Humans , Patient Care Team
14.
Cleft Palate Craniofac J ; 58(11): 1361-1369, 2021 11.
Article in English | MEDLINE | ID: mdl-33467909

ABSTRACT

BACKGROUND: Single-suture craniosynostosis (SSC) can be associated with neurodevelopmental deficits. We examined the correlation between morphologic severity and incidence of speech-language or psychological concerns. METHODS: In 62 patients (33 sagittal, 17 metopic, and 12 unicoronal), morphologic severity was determined via preoperative computed tomography (CT). Severity metrics for sagittal, metopic, and unicoronal synostosis were adjusted cephalic index (aCI), interfrontal angle (IFA), and anterior cranial fossa area ratio (ACFR), respectively. Speech-language and psychological concerns were assessed at age ≥4.5 years and defined as recommendation for therapy or monitoring. RESULTS: Mean assessment age was 5.7 years; 32% had a speech-language concern and 44% had a psychological concern; 44% had neither. Sagittal: Mean aCI of those with a speech-language concern (0.62) and those without (0.62) were equivalent (P = .580), as were mean aCI of those with a psychological concern (0.62) and those without (0.62; P = .572). Metopic: Mean IFA with (117.9) and without (125.2) a speech-language concern were equivalent (P = .326), as were mean IFA with (120.2) and without (123.2) a psychological concern (P = .711). Unicoronal: Mean ACFR with (0.65) and without (0.69) a psychological concern (P = .423) were equivalent. However, mean ACFR with (0.74) and without (0.63) a speech-language concern were not (P = .022*). Bivariate rank correlation showed significant association between morphologic severity and speech-language score only for unicoronal synostosis (ρ = .722; P = .008*). CONCLUSION: A significant portion of patients with SSC had speech-language or psychological concerns. We found no correlation between morphologic severity and incidence of speech-language or psychological concerns for patients with sagittal or metopic synostosis. Morphological severity did correlate with speech concerns in patients with unicoronal synostosis.


Subject(s)
Craniosynostoses , Speech , Child, Preschool , Craniosynostoses/diagnostic imaging , Humans , Incidence , Tomography, X-Ray Computed
15.
Cleft Palate Craniofac J ; 58(12): 1517-1525, 2021 12.
Article in English | MEDLINE | ID: mdl-33535807

ABSTRACT

OBJECTIVE: To describe the incidence and timing of provider-specific interventions for children with isolated cleft palate. DESIGN: This was a retrospective cohort study involving review of medical records. SETTING: Multidisciplinary team care clinic at a tertiary academic children's hospital between January 2000 and July 2019. PATIENTS: Patients with isolated nonsyndromic cleft palate seen by an American Cleft Palate-Craniofacial Association-approved team; 138 children were included. MAIN OUTCOME MEASURES: Study outcomes included incidence of secondary velopharyngeal management, tympanostomy tube insertion, speech therapy, hearing loss, dental/orthodontic treatment, and psychology interventions. Provider-specific outcomes were calculated for patients at ages 0 to 3, 3 to 5, and >5 years. RESULTS: Median follow-up time was 7.0 years (interquartile range: 3.3-11.8 years). At their last team assessment, 42% of patients still had conductive hearing loss. The rate of tympanostomy tube insertions not done alongside a palatoplasty was highest for ages 3 to 5 and dropped after new American Academy of Otolaryngology-Head and Neck Surgery Foundation guidelines in 2013 (P = .015); 54% of patients received speech-language therapy during follow-up. Palatoplasty, psychology, and dental/orthodontic treatment were all less common than speech or ENT treatment (P < .01). Secondary palatoplasty was performed in 31 patients (22%). Patients who received speech, dental/orthodontic, or psychology intervention followed up longer than those who did not (9.8 vs 2.1 years, P < .001). CONCLUSION: Half of the patients terminated team follow-up by age 7, suggesting that burden of care outweighed perceived benefits of continued follow-up for many families. These results can be used to adjust protocols for children with isolated cleft palate.


Subject(s)
Cleft Palate , Velopharyngeal Insufficiency , Child , Child, Preschool , Cleft Palate/surgery , Humans , Infant, Newborn , Middle Ear Ventilation , Patient Care Team , Retrospective Studies , Speech , Treatment Outcome , Velopharyngeal Insufficiency/surgery
16.
J Craniofac Surg ; 31(5): 1186-1190, 2020.
Article in English | MEDLINE | ID: mdl-32634133

ABSTRACT

INTRODUCTION: Endoscope-assisted craniectomy and spring-assisted cranioplasty with post-surgical helmet molding are minimally invasive alternatives to the traditional craniosynostosis treatment of open cranial vault remodeling. Families are often faced with deciding between techniques. This study aimed to understand providers' practice patterns in consulting families about surgical options. METHODS: An online survey was developed and distributed to 31 providers. The response rate was 84% (26/31). RESULTS: Twenty-six (100%) respondents offer a minimally invasive surgical option for sagittal craniosynostosis, 21 (81%) for coronal, 20 (77%) for metopic, 18 (69%) for lambdoid, and 12 (46%) for multi-suture. Social issues considered in determining whether to offer a minimally invasive option include anticipated likelihood of compliance (23 = 88%), distance traveled for care (16 = 62%) and financial considerations (6 = 23%). Common tools to explain options include verbal discussion (25 = 96%), 3D reconstructed CT scans (17 = 65%), handouts (13 = 50%), 3D models (12 = 46%), hand drawings (11 = 42%) and slides (10 = 38%). Some respondents strongly (7 = 27%) or somewhat (3 = 12%) encourage a minimally invasive option over open repair. Others indicate they remain neutral (7 = 27%) or tailor their approach to meet perceived needs (8 = 31%). One (4%) somewhat encourages open repair. Despite this variation, all completely (17 = 65%), strongly (5 = 19%) or somewhat agree (4 = 15%) they use shared decision making in presenting surgical options. CONCLUSION: This survey highlights the range of practice patterns in presenting surgical options to families and reveals possible discrepancies in the extent providers believe they use shared decision making and the extent it is actually used.


Subject(s)
Craniosynostoses/surgery , Skull/surgery , Adult , Aged , Craniosynostoses/diagnostic imaging , Humans , Middle Aged , Minimally Invasive Surgical Procedures , Referral and Consultation , Tomography, X-Ray Computed , Young Adult
17.
Cleft Palate Craniofac J ; 57(7): 909-918, 2020 07.
Article in English | MEDLINE | ID: mdl-31950854

ABSTRACT

Family-centered care is a high-priority focus area in health care and is associated with increased family satisfaction and quality of life, better health outcomes and family follow-up, decreased burden of care, and improved efficiency of resource utilization. Motivated by our aim to improve clinic efficiency and patient retention, our multidisciplinary cleft palate and craniofacial center has been undergoing a complex family-centered reorganization over the past 3 years. We seek to share our experience in hope the information will be a useful starting point to other teams in structuring their own family-centered improvements. We suggest the following stepwise method to achieve a more family-centered process: (1) gathering preintervention data, (2) brainstorming challenges with stakeholders, (3) brainstorming solutions with stakeholders, (4) implementation, (5) follow-up and troubleshooting, (6) further implementation, and (7) gathering postintervention data. Additionally, we found the use of institutional resources added substantial value to our efforts.


Subject(s)
Cleft Palate , Quality of Life , Cleft Palate/therapy , Humans , Patient Care Team , Patient-Centered Care
18.
Cleft Palate Craniofac J ; 57(7): 900-908, 2020 07.
Article in English | MEDLINE | ID: mdl-31961207

ABSTRACT

OBJECTIVE: To report the incidences of secondary lip and nose operations, otolaryngology procedures, speech-language therapy, neurodevelopmental concerns, and dental and orthodontic issues in children with isolated cleft lip to inform multidisciplinary cleft team protocols. SETTING: An American Cleft Palate-Craniofacial Association-approved team at a tertiary academic children's hospital. DESIGN: Retrospective cohort study of patients evaluated through longitudinal clinic visits by a multidisciplinary cleft palate and craniofacial team between January 2000 and June 2018. PATIENTS, PARTICIPANTS: Children with nonsyndromic cleft lip with or without cleft alveolus (n = 92). RESULTS: Median age at final team visit was 4.9 years (interquartile range: 2.4-8.2 years). Secondary plastic surgery procedures were most common between ages 3 and 5 (135 per 1000 person-years), and the majority of these procedures were minor lip revisions. The rate of tympanostomy tube insertion was highest before age 3 (122 per 1000 person-years). By their final team visit, 88% of patients had normal hearing and 11% had only slight to mild conductive hearing loss. No patients had speech errors attributable to lip abnormalities. Psychological interventions, learning disabilities, and dental or orthodontic concerns were uncommon. CONCLUSIONS: Most patients with isolated cleft lip may not require long-term, longitudinal evaluation by cleft team specialists. Cleft teams should develop limited follow-up protocols for these children to improve resource allocation and promote value-based care in this patient population.


Subject(s)
Cleft Lip , Cleft Palate , Child , Child, Preschool , Cleft Lip/epidemiology , Cleft Lip/surgery , Cleft Palate/epidemiology , Cleft Palate/surgery , Humans , Patient Care Team , Retrospective Studies
19.
Ann Plast Surg ; 82(6): 679-685, 2019 06.
Article in English | MEDLINE | ID: mdl-31082848

ABSTRACT

INTRODUCTION: Craniosynostosis is typically corrected surgically within the first year of life through cranial vault reconstruction. These procedures often leave open calvarial defects at the time of surgery, which are anticipated to close over time in a large proportion of cases. However, residual calvarial defects may result as long-term sequelae from cranial vault remodeling. When larger defects are present, they may necessitate further reconstruction for closure.Better understanding of the calvarial osseous healing process may help to identify which defects will resolve or shrink to acceptable size and which will require further surgery. Our study aims to assess the long-term changes in defect size after cranial vault reconstruction for craniosynostosis. METHODS: One-year postoperative and long-term computed tomography scans were retrieved from the craniofacial anomalies archive. Analysis used custom software. All defects above the size of 1 cm were analyzed and tracked for calvarial location, surface area, and circularity. Monte Carlo simulation was performed to model the effect of initial defect size on the rate of defect closure. RESULTS: We analyzed a total of 74 defects. The mean ± SD initial defect surface area was 3.27 ± 3.40 cm. The mean ± SD final defect surface area was 1.71 ± 2.54 cm. The mean ± SD percent decrease was 55.06% ± 28.99%. There was a significant difference in the percentage decrease of defects in the parietal and frontoparietal locations: 68.4% and 43.7%, respectively (P = 0.001). Monte Carlo simulation results suggest that less than 10% of defects above the size of 9 cm will close to the size of 2.5 cm or less. CONCLUSIONS: We describe and make available a novel validated method of measuring cranial defects. We find that the large majority of initial defects greater than 9 cm remain at least 1 in in size (2.5 cm) 1 year postoperatively. In addition, there appear to be regional differences in closure rates across the cranium, with frontoparietal defects closing more slowly than those in the parietal region. This information will aid surgeons in the decision-making process regarding cranioplasty after craniosynostosis correction.


Subject(s)
Craniosynostoses/diagnostic imaging , Craniosynostoses/surgery , Imaging, Three-Dimensional , Monitoring, Physiologic/methods , Plastic Surgery Procedures/methods , Skull/physiopathology , Bone Transplantation/methods , Cohort Studies , Female , Follow-Up Studies , Humans , Infant , Male , Monte Carlo Method , Postoperative Complications/physiopathology , Postoperative Complications/therapy , Retrospective Studies , Risk Assessment , Skull/surgery , Time Factors , Tomography, X-Ray Computed/methods , Treatment Outcome
20.
J Craniofac Surg ; 30(1): 127-132, 2019 Jan.
Article in English | MEDLINE | ID: mdl-30376506

ABSTRACT

BACKGROUND: Early management of unilateral coronal synostosis (UCS) aims to treat the cranial abnormality with the hope of improving middle and lower facial morphology. This study analyzed osseous volume and 3-dimensional distances in the midface and mandible of patients with UCS to assess changes in facial symmetry following a cranial vault procedure. METHODS: Patients who underwent fronto-orbital advancement for UCS repair between 1981 and 2012 with follow-up of at least 3 years were included. Computed tomography-based 3-dimensional reconstructions of the mandible and LeFort III midface were divided by 3 midline osseous landmarks and measured for volume. Distances between 11 osseous landmarks were measured in the midface and mandible. Ratios between the measurements on synostotic and nonsynostotic sides were calculated. Presurgical to postsurgical changes were evaluated with paired samples t tests. The study was powered to detect differences between preoperative and postoperative ratios of at least 3%. RESULTS: Eleven patients were included. Mean age at initial imaging was 4.7 ± 3.2 months (range, 0.4-9.2 months) with postoperative follow-up of 9.0 ±â€Š5.3 years (range, 3.3-17.0 years). Midfacial symmetry of osseous volume improved following surgery (synostotic to nonsynostotic ratio, 94.1% vs 98.9%, P = 0.044). The width (P < 0.001), height (P = 0.039), and anterior-posterior depth of the midface (P = 0.011) also became more symmetric. In the mandible, however, volumetric and linear symmetry did not improve. CONCLUSIONS: Symmetry of the midface, but not the mandible, improves significantly following the cranial procedure in patients with UCS.


Subject(s)
Craniosynostoses/surgery , Face/diagnostic imaging , Face/pathology , Mandible/diagnostic imaging , Mandible/pathology , Adolescent , Anatomic Landmarks , Cephalometry , Child , Child, Preschool , Female , Follow-Up Studies , Humans , Imaging, Three-Dimensional , Infant , Infant, Newborn , Male , Postoperative Period , Tomography, X-Ray Computed
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