Cleft Palate-Craniofacial Journal最新文献

ObjectiveThe study objective was to characterize shared online experiences surrounding craniosynostosis.MethodsIsolated and syndromic craniosynostosis-related consecutive posts (N = 700) made by patients and caregivers were extracted from TikTok and Instagram between 2017-2024. A cross-sectional qualitative analysis following guidelines for practical thematic analysis was performed.ResultsThe majority of posts were by caregivers (96%) and by females (97%). Forty categorical subthemes from social media posts were synthesized into 4 predominant themes. Overarching thematic trends included Emotional and Psychological Support (47%), Medical Information and Treatment (27%), Family and Social Dynamics (15%), and Awareness, Education, and Advocacy (12%).ConclusionSocial media is used by caregivers, primarily mothers, for emotional support, processing health information, sharing experiences, raising awareness, and celebrating "cranioversaries." Male and patient perspectives were underrepresented. Physicians may use social media to gain insights, disseminate quality health information, and connect with patients.

ObjectiveThis bibliometric study seeks to provide a comprehensive overview of the 100 most frequently cited articles in the domain of cleft orthodontics. The analysis will reveal key influential publications, collaborative author networks, and identify prevailing research themes within the field.MethodThe studies related to Orthodontics in the realm of cleft lip and palate (CLP) were retrieved from the Scopus database on 30th August 2024 using key terms. The results obtained were sorted in descending order of citations and the 100 top-cited articles were hand-filtered. RStudio software version 4.2.0 and Bibliometrix R-package was used for performing scientometrics involving co-citation, co-occurrence, collaboration and co-word analyses, bibliographic coupling and network mapping.ResultsA total of n = 3984 articles were retrieved from which top-100 cited articles were filtered. These documents were published during 1950-2019 with peak production in 1997. The United States and the Netherlands were the most prolific countries involved in the given research. The majority of the highly referenced articles pertained to alveolar bone grafting, and treatment outcomes being the second common focus followed by Infant and early orthopedics (Naso-alveolar moulding, Maxillary Protraction) and facial growth during the given period.ConclusionsThematic mapping depicted bone grafting, alveoloplasty (infant orthopedics) and maxillofacial development as the more developed core topics than the psychology and self-perception of patients with CLP. Recent research trends have shifted towards three-dimensional assessment methods.

ObjectiveTo assess the reliability of speech data and speech-related quality indicators in the Swedish quality registry for cleft lip and palate (CLP) at 10 years of age.DesignRetrospective study.SettingUniversity hospitals.ParticipantsOne hundred twenty-one 10-year-olds with unilateral or bilateral CLP.Main outcome measuresSix independent raters reassessed audio recordings for comparison with registry data. For calculation of agreement, the single measures intraclass correlation coefficient (ICC) was used for percentage of consonants correct (PCC) and non-oral speech errors, quadratic weighted kappa for velopharyngeal competence (VPC), and percentage agreement and kappa for quality indicators. The results of the three to four raters with the highest intra-rater and inter-rater reliability were used for comparison with registry data.ResultsThere was excellent agreement between registry data and reassessments for PCC (ICC, 0.93) and percentage of non-oral errors (ICC, 0.80). For VPC, one rater and registry data had good agreement (k, 0.704); the remaining cases had fair agreement (k, 0.476-0.554). The percentage agreement between registry data and reassessments for quality indicators ranged from fair to excellent. When calculated with kappa, agreement was good to excellent (mean of all k values, 0.67-0.70).ConclusionsThe CLP registry variables PCC and percentage of non-oral errors and the quality indicators without non-oral speech errors and competent/marginally incompetent velopharyngeal function are reliable for use in clinical audits and research of 10-year-olds. The three-tier ratings of VPC have weaker reliability but can still be useful in more detailed analyses if interpreted with caution.

ObjectiveThe primary aim was to assess the cost (£) to the National Health Service (NHS) of hospital treatment for individuals born with bilateral cleft lip and palate (BCLP), unilateral cleft lip and palate (UCLP), and cleft palate (CP), from birth to 20 years. The secondary aim was to assess the number of scheduled clinical outpatient and inpatient/outpatient surgical visits for this cohort.DesignRetrospective micro-costing analysis.SettingPatients treated within the South West of England Cleft Service (UK).PatientsTwenty-three case-notes of children born with cleft (5 BCLP; 10 UCLP; 8 CP) were identified from birth up to and including secondary alveolar bone graft (ABG), and a second group of 23 hospital case-notes (3 BCLP; 10 UCLP; 10 CP) were identified, post-ABG to 20 years.ResultsMean costs from birth to ABG were £17,004 (BCLP), £11,620 (UCLP), and £6137 (CP), and post-ABG to 20 years were £9,463, £7,945, and £3,816, respectively. The largest costs were for staff. Repeat surgery had a significant impact on costs. The mean number of clinical outpatient visits for BCLP, UCLP, and CP were 140, 110 and 83 respectively and 8, 6 and 2 for inpatient/outpatient surgical visits, respectively.ConclusionsCosts for provision of cleft care by the NHS are significant. The greatest costs were incurred with care for patients with BCLP. Patients were expected to attend many appointments, with BCLP experiencing the most visits. Engagement with quality improvement programmes to minimise repeat surgery, and remote consultation for certain appointments, to reduce the patient burden are recommended.

ObjectiveTo assess research trends and publication patterns of literature related to presurgical infant orthopaedics (PSIO) through a bibliometric analysis of the top 100 most-cited articles.Material and methodsThe top 100 most-cited articles were identified in the Web of Science (WoS) database using search terms related to PSIO on April 23, 2024, without any restrictions to study design, publication date and language. Standard information about each study was extracted. Citations from WoS, Scopus and PubMed databases were compared. The level of evidence for each article included was assessed. Association between different variables was calculated using Spearman's correlation coefficient with statistical significance set at p < 0.05. Visual analysis of the author's keyword co-occurrence, co-authorship analysis of authors, and citation analysis of journals and authors were performed using VOSviewer.ResultsTop cited articles were published from 1994 to 2020, with total individual database citations being WoS (n = 5378), Scopus (n = 6184) and PubMed (n =  10 450). Eleven articles were considered classic articles. Cleft Palate and Craniofacial Journal (Impact Factor = 1.1) had a maximum number of articles and citations. Two hundred eighty-five individuals contributed to top-cited articles, with 62 corresponding authors from 19 countries. A maximum number of authors were affiliated with universities in the United States. The most common keyword used was "nasoalveolar molding (n = 24)", "cleft palate (n = 16)", and "infant orthopedics (n = 16)". The study design of the majority of articles was retrospective and follow-up studies (level 3; n = 53). A weak negative correlation was observed between citation metrics and both the publication year (P < 0.01) and the level of evidence (P < 0.01).ConclusionThis analysis recognises the contributions of experts and offers valuable insights into trends that have shaped the development and evidence related to PSIO research. Future research should focus on integrating advanced technologies, conducting longitudinal studies, fostering collaboration, and emphasizing patient-centred outcomes.

ObjectiveThis study aimed to develop an automatic methodology for mandibular landmarking and measurement using non-rigid registration as well as analyze the accuracy of automatic landmarking and measurements.DesignStatistical analysis.SettingDigital technology center, tertiary hospital.Participants130 healthy Chinese adults with equal gender distribution, average age 28.2 ± 5.6 years.MethodsFour mean shape mesh templates were generated from 100 head CT scans. Following manual indication of landmarks, these templates were applied for automatic landmark annotation and measurements on mandibles from another 30 head CT scans, using non-rigid iterative closest point registration.Main Outcome Measure:Differences of landmark coordinates and measurements between automatic and manual annotation were analyzed using mean difference, centroid size, Euclidean distances and intraclass correlation coefficient (ICC), assessing the accuracy and validity of automatic landmark annotation.ResultsThe majority of automatic landmarks (16/22) did not exhibit consistent displacement to specific direction. ICCs of all landmark coordinates exceed 0.950, with 87.9% larger than 0.990. The average Euclidean distance between manual and automatic landmarks was 2.038 ± 0.947 mm. Most ICCs of linear and angular measurements between manual and automatic annotation (20/26) exceeded 0.900, with the average errors being 1.425 ± 0.973 mm and 2.257 ± 0.649 °, respectively.ConclusionsA novel and efficient method for automatic landmark annotation was established based on non-rigid registration. Its credibility and accuracy in mandibular annotation and measurements were demonstrated.

ObjectivePain following primary palatoplasty can adversely affect nutritional and quality of life following primary palatoplasty. The incorporation of buccal flaps during primary cleft palate (CP) repair provides additional tissue to reduce the risk of velopharyngeal insufficiency, though the additional donor site may alter pain levels in the postoperative period. This study sought to compare postoperative pain levels in patients undergoing primary CP repair with or without buccal flaps.DesignA single-institution, retrospective cohort study.SettingAn academic children's hospital with an affiliated comprehensive cleft care team.PatientsPatients age 18 months or less with cleft palate undergoing primary palatoplasty from 2016 to 2021 were included. Patients were stratified by the number of buccal flaps utilized during repair.Main Outcome MeasuresPrimary outcome was 24-h postoperative pain score, measured using the FLACC pain scale. Secondary outcome was 24-h postoperative narcotic use, measured in morphine milligram equivalents (MME).ResultsA total of 106 patients (53 without buccal flaps, 53 with 1 + buccal flaps) were included. There was no significant difference in postoperative pain scores between the groups (p > 0.9). Both groups had similar postoperative narcotic utilization (p = 0.8).ConclusionsThis study demonstrates no significant difference in postoperative pain levels or narcotic utilization between patients undergoing primary Furlow palatoplasty with or without buccal flaps. This information can help address parental concerns regarding pain in the context of a larger donor site for patients undergoing primary palatoplasty with buccal flaps. Larger, multi-institutional randomized trials are needed to confirm these findings.

ObjectivePalatal fistulas after palatoplasty could pose difficulties for both patients and surgeons. Numerous surgical approaches are available to treat palatal fistulas. In this manuscript, we investigate surgical treatment options for palatal fistula repair looking at the different anatomical locations, and we create a summary of surgical approaches to facilitate the decision-making process for palatal fistulae repair.DesignIn this cross-sectional survey, nine anonymized patient cases with palatal fistulae that differed in severity and anatomical location were presented to participants from the International Cleft Master Course in Amsterdam about "Palatal Fistulas". Participants were invited to participate in this survey. A total of 141 participants reported their preferred surgical treatment options for fistula repair at different anatomical locations.ResultsWe created different options for fistula treatment, catalogued by fistula location. This overview gives the surgeon possible approaches for each location. If the soft palate is involved, this overview underscores the importance of including velopharyngeal insufficiency management into the fistula repair. For hard palate involvement, our overview lists techniques available for nasal lining repair and for oral lining repair in each region.ConclusionsWe provide a comprehensive overview of potential surgical approaches to repair palatal fistulae. This inventory of techniques is grouped per location to support surgeons in their decision-making process when confronted with a palatal fistula.

ObjectiveTo determine whether children born with a cleft palate ± lip (CP ± L) and additional congenital differences (ACDs - including 'Congenital malformations and deformations' as coded in ICD-10), are less likely to meet the three national speech outcome standards at age five compared to children with CP ± L and no ACDs.DesignAn observational study, utilizing national data from the UK Cleft Registry and Audit NEtwork (CRANE) Database linked to national administrative data of hospital admissions.SettingNational Health Service, England.Patients2191 children (993 female, 1198 male) with CP ± L, born 2006-2012 in England, with complete speech data and consent to data linkage.Outcome MeasurePerceptual speech analysis utilised the Cleft Audit Protocol for Speech - Augmented (CAPS-A) rating and United Kingdom National Speech Outcome Standards (Speech Standard 1 (SS1), Speech Standard 2a (SS2a) and Speech Standard 3 (SS3)).ResultsOf 2191 children, 759 (35%) had at least one ACD. Presence of one ACD did not significantly impact speech outcomes but two or more ACDs reduced the odds of achieving all three speech standards: SS1 aOR 0.602 (CI 0.45-0.82, P = .002), SS2a aOR 0.563 (CI 0.41-0.77, P = .001), SS3 aOR 0.606 (0.43-0.84, P = .003). When exploring ACDs by ICD-10 groupings, congenital malformations of the 'Eye, ear, face and neck', 'Circulatory system', 'Digestive system', 'Musculoskeletal system' and 'Other congenital malformations' reduced a child's odds of achieving the speech standards.ConclusionsACDs, in the absence of a known syndrome, have a significant impact on speech outcome at age five. Incorporating these factors into risk-adjustment models for service level outcome reporting is recommended.

ObjectiveTo explore the social experiences of orofacial cleft patients and contextualize sociodemographic influence on management disparities in rural and urban areas of Indonesia.DesignThis study explores patients' lives in two demographical settings in South Sulawesi Province, Makassar and Selayar Islands Regency. It employs ethnography, including open-ended interviews and observations of patients, their neighborhoods, schools, and workplaces. Secondary data from the two regencies and South Sulawesi province are employed to demonstrate demographic disparities in patient care between urban and rural areas. Thematic content analysis was performed according to socio-demographical differences and networks involved in the management.ParticipantsThis study engaged a diverse group of participants, including patients, family caregivers, medical team members, and patient peers (n = 40), primarily from middle to low-income families.ResultsParents in both regions had limited knowledge about treatment modalities, which resulted in concerns regarding the safety of surgical procedures and the postponement of mandatory surgeries. In rural areas, patients faced significant financial burdens when referred to Makassar. In contrast to parents in Selayar, parents in Makassar prioritized more social interaction to ensure that their children attended school, college, and work. Patients in both settings reported facing various obstacles at different stages of their lives.ConclusionsSociodemographic conditions contribute to disparities in treatment, social positioning, and self-perception. Promoting education about the safety of medical and rural surgical procedures is vital. Involving patients in public activities and providing support from family caregivers is paramount to nurturing patients' optimistic outlooks.