Cleft Palate-Craniofacial Journal最新文献

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Management of Velopharyngeal Dysfunction (VPD) Following Cleft Palate Repair: A Comprehensive Decision-Making Process Based on Severity and Structural Deficiencies. 腭裂修复术后的伶咽功能障碍(VPD)管理:基于严重程度和结构缺陷的综合决策过程。
IF 1.1 4区 医学
Cleft Palate-Craniofacial Journal Pub Date : 2025-05-01 Epub Date: 2024-01-12 DOI: 10.1177/10556656231225573
Syed Altaf Hussain, Charanya Vijayakumar, Subramaniyan Balasubramanian, Sara Rahavi-Ezabadi, Vishnu Sundar, Deborah Sybil, Zaid Hussain
{"title":"Management of Velopharyngeal Dysfunction (VPD) Following Cleft Palate Repair: A Comprehensive Decision-Making Process Based on Severity and Structural Deficiencies.","authors":"Syed Altaf Hussain, Charanya Vijayakumar, Subramaniyan Balasubramanian, Sara Rahavi-Ezabadi, Vishnu Sundar, Deborah Sybil, Zaid Hussain","doi":"10.1177/10556656231225573","DOIUrl":"10.1177/10556656231225573","url":null,"abstract":"<p><p>ObjectiveTo describe a comprehensive decision-making process for surgical correction of structural Velopharyngeal Dysfunction (VPD) following cleft palate repair and evaluate its efficacy.DesignRetrospective study.SettingTertiary care hospital.Patients300 consecutive patients with unilateral or bilateral cleft lip and palate (CLP) or isolated cleft palate (CP) diagnosed with clinical VPD following cleft palate repair between 2009 and 2014. Of these 206 patients had structural VPD and underwent surgical correction.InterventionsSurgical corrections were carried out according to the comprehensive two stage decision making process developed by the investigators. Step 1 of decision-making involved visualisation of the VP sphincter function by nasoendoscopy. This was followed by step 2 which involved per-operative identification of scarring, tissue loss, hypoplasia and other structural deficiencies in the soft palate and septal mucoperiosteum. The choice of operation was then made from a repertoire of interrelated and escalating surgical procedures consisting of palate revision and pharyngoplasties ranging from most anatomical to the least.Main outcome measuresEvidence of postoperative restoration of VP function on nasoendoscopy, evaluation of speech for hypernasality, understandability, acceptability and symptoms of obstructive sleep apnea.ResultsComplete VP closure was demonstrated in 94% of patients treated using this algorithm. There was significant improvement in all speech parameters (p < 0.00001).ConclusionOur comprehensive decision-making process is designed to effectively correct structural VPD according to the severity of structural and functional deficiencies in the soft palate and avoid over treatment.</p>","PeriodicalId":49220,"journal":{"name":"Cleft Palate-Craniofacial Journal","volume":" ","pages":"761-771"},"PeriodicalIF":1.1,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139425829","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Three-dimensional Analysis of Maxillary Morphology in Infants with Unilateral Cleft Lip and Palate. 单侧唇腭裂婴儿上颌骨形态的三维分析。
IF 1.1 4区 医学
Cleft Palate-Craniofacial Journal Pub Date : 2025-05-01 Epub Date: 2024-02-28 DOI: 10.1177/10556656241228903
Jie Zheng, Wenying Kuang, Shiyu Yuan, Hong He, Wenjun Yuan
{"title":"Three-dimensional Analysis of Maxillary Morphology in Infants with Unilateral Cleft Lip and Palate.","authors":"Jie Zheng, Wenying Kuang, Shiyu Yuan, Hong He, Wenjun Yuan","doi":"10.1177/10556656241228903","DOIUrl":"10.1177/10556656241228903","url":null,"abstract":"<p><p>ObjectiveTo three-dimensionally (3D) analyze the maxillary morphology of infants with unilateral cleft lip and palate (UCLP) and preliminarily classify the alveolar arch to assist in personalization of sequence therapy.DesignRetrospective study.SettingPatients with UCLP referred to outpatients' clinic.Participants84 nonsyndromic infants with complete UCLP were recruited (58 boys, 26 girls, mean age 29.48 days).Main Outcome MeasureMorphometric analysis was conducted on 3D maxillary models. Principal component analysis (PCA) and cluster analysis were combined to classify maxillary phenotypes preliminarily. The Wilcoxon Signed Rank test and the Kruskal-Wallis test were used to compare differences between variables. A <i>P</i> value less than .05 was considered statistically significant.ResultsThe maxilla was divided into three types: narrow, homogenous and broad, accounting for 9.52%, 23.81% and 66.67% respectively. The alveolar cleft site (median value) was located in 61% of the total length of the alveolar arch. In the comparison of anterior and total alveolar lengths, the non-cleft side had longer alveolar bone than the affected side, a difference of approximately 2 mm. Pairwise comparisons of variables describing alveolar symmetry revealed significant differences in all subjects; whereas type C had poorer arch symmetry than types A and B, mainly in terms of anterior and overall symmetry.ConclusionsIn infants with UCLP, the maxillary alveolar arch was inherently asymmetrical with partially bone missing (about 2 mm). Significant differences in alveolar bone morphology and symmetry exist between different types of infants, with individuals with broad clefts (type C, the largest proportion) having the worst maxillary development.</p>","PeriodicalId":49220,"journal":{"name":"Cleft Palate-Craniofacial Journal","volume":" ","pages":"835-844"},"PeriodicalIF":1.1,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139984288","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Impact of Neighborhood Deprivation and Social Vulnerability on Outcomes and Interventions in Patients with Cleft Palate. 邻里贫困和社会脆弱性对腭裂患者的治疗效果和干预措施的影响。
IF 1.1 4区 医学
Cleft Palate-Craniofacial Journal Pub Date : 2025-05-01 Epub Date: 2024-01-09 DOI: 10.1177/10556656231226070
Kaamya Varagur, John Murphy, Gary B Skolnick, Sybill D Naidoo, Lynn M Grames, Katherine A Dunsky, Maithilee Menezes, Alison K Snyder-Warwick, Kamlesh B Patel
{"title":"Impact of Neighborhood Deprivation and Social Vulnerability on Outcomes and Interventions in Patients with Cleft Palate.","authors":"Kaamya Varagur, John Murphy, Gary B Skolnick, Sybill D Naidoo, Lynn M Grames, Katherine A Dunsky, Maithilee Menezes, Alison K Snyder-Warwick, Kamlesh B Patel","doi":"10.1177/10556656231226070","DOIUrl":"10.1177/10556656231226070","url":null,"abstract":"<p><p>ObjectiveTo examine whether neighborhood disadvantage impacts length of follow-up, interventions, and outcomes for patients with cleft palate.DesignRetrospective cohort.SettingCleft Palate Craniofacial Institute Database at St. Louis Children's Hospital.Patients/ParticipantsPatients with cleft palate following in St. Louis Children's Hospital Cleft Palate Multidisciplinary Team Clinic.InterventionsPrimary 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 MeasureFollow-up through age 5, surgeries and surgical complications, speech, developmental, and behavioral outcomesResults205 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).ConclusionsNeighborhood disadvantage impacts speech and developmental outcomes in patients with cleft palate despite comparable length of follow-up in multidisciplinary team clinic.</p>","PeriodicalId":49220,"journal":{"name":"Cleft Palate-Craniofacial Journal","volume":" ","pages":"801-810"},"PeriodicalIF":1.1,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139404894","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
'Suspension Palatoplasty' - A method of surgical correction of VPI post Cleft Palate repair. 悬吊式腭成形术"--腭裂修复术后 VPI 的手术矫正方法。
IF 1.1 4区 医学
Cleft Palate-Craniofacial Journal Pub Date : 2025-05-01 Epub Date: 2024-03-28 DOI: 10.1177/10556656241228112
Mukunda Reddy Damalachervu, Rajesh Yellinedi, A Dharanipriya, V Lalasa Mary, Rambabu Nuvvula
{"title":"'Suspension Palatoplasty' - A method of surgical correction of VPI post Cleft Palate repair.","authors":"Mukunda Reddy Damalachervu, Rajesh Yellinedi, A Dharanipriya, V Lalasa Mary, Rambabu Nuvvula","doi":"10.1177/10556656241228112","DOIUrl":"10.1177/10556656241228112","url":null,"abstract":"<p><p>ObjectiveTo design the technique of 'Suspension Palatoplasty' for Velopharyngeal Insufficiency (VPI) post Cleft Palate (CP) based on optimal spatial positioning of palate at the time of VPI correction, by using a non-obstructive, high, midline pharyngeal flap for predictable velopharyngeal closure and normal speech.To evaluate the results of CP patients with VPI operated using the technique of 'Suspension palatoplasty'.DesignAn ambi-spective longitudinal clinical study.SettingComprehensive cleft care clinic in a private trust hospital.Patients, ParticipantsPatients operated using the 'Suspension Palatoplasty' technique for VPI post CP repair between 2014 and 2018 with a minimum follow-up period of 5 years.Interventions'Suspension Palatoplasty' - Double Opposing Z (DOZ) plasty with palatal myoplasty is used to revise soft palate and a narrow superiorly based pharyngeal flap is used to suspend it for a dynamic velopharyngeal closure.Main outcome measureSpeech outcome and surgical complications.Results70 out of 119 studied were found to have normal speech (59%), and another 25 patients (21%) had acceptable speech. Thus 95 out of 119 patients (80%) had normal or near-normal speech and did not require any further speech therapy or surgeries. 12 patients had snoring without difficulty in breathing. One patient had symptoms suggestive of obstructive sleep apnea. Younger patients had a higher percentage of normal speech outcomes. Many of our adult patients also attained normal speech.Conclusion'Suspension Palatoplasty' aims to achieve normal speech with little effort. It has minimal side effects. The author has performed 403 cases to date.</p>","PeriodicalId":49220,"journal":{"name":"Cleft Palate-Craniofacial Journal","volume":" ","pages":"870-881"},"PeriodicalIF":1.1,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140307598","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Assessment of Quality and Readability of Web-Based Arabic Knowledge About Cleft Lip and/or Palate: An Infodemiology Study. 关于唇裂和/或腭裂的阿拉伯语网络知识的质量和可读性评估:一项信息学研究。
IF 1.1 4区 医学
Cleft Palate-Craniofacial Journal Pub Date : 2025-05-01 Epub Date: 2023-12-29 DOI: 10.1177/10556656231223861
Muath S Alassaf, Saad M Hasubah, Shadan H Sharbib, Reem Alhammad, Ahmad A Othman, Mahmoud A Alsulaimani, Ahmad A Qazali
{"title":"Assessment of Quality and Readability of Web-Based Arabic Knowledge About Cleft Lip and/or Palate: An Infodemiology Study.","authors":"Muath S Alassaf, Saad M Hasubah, Shadan H Sharbib, Reem Alhammad, Ahmad A Othman, Mahmoud A Alsulaimani, Ahmad A Qazali","doi":"10.1177/10556656231223861","DOIUrl":"10.1177/10556656231223861","url":null,"abstract":"<p><p>ObjectiveThe aim of this study is to evaluate the quality and readability of the Arabic web-based information about cleft lip and/or palate (CL/P).<i>Materials and Method</i>: Searching in three engines and checking eligibility for the first 300 websites. The quality of the included websites (72) was assessed using the DISCERN questionnaire, JAMA benchmarks, and HON code. The readability of the websites was assessed using three readability tests: FKGL, SMOG, and FRE. Then, data analysis was done.ResultsAll checked websites were partly related to CL/P and contained medical facts. The affiliation of most of the websites was commercial 33 (45.8%). The mean overall DISCERN score was 2.87 (± 1.61). The maximum score was not achieved by any website, and only one (1.4%) website had the minimum score. For JAMA benchmarks, the currency was the most achieved item in 39 (54.2%) websites, and none of the websites achieved the four items. Only one website had the HON code. Based on the FRE scale, the level was very easy for most of the websites 57 (79.2%).ConclusionThe available content about CL/P is readable but with moderate to poor quality and trustfulness. Undoubtedly, there is a serious need to increase and improve the quality of the web-based Arabic population's knowledge about CL/P, especially by governmental institutions and universities. Establishing specialized websites for CL/P is also needed.</p>","PeriodicalId":49220,"journal":{"name":"Cleft Palate-Craniofacial Journal","volume":" ","pages":"754-760"},"PeriodicalIF":1.1,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139075655","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Detecting Gene-Gene Interaction among DNA Repair Genes in Chinese non-Syndromic Cleft lip with or Without Palate Trios. 检测中国非综合征唇裂伴或不伴腭裂三联症中 DNA 修复基因间的基因相互作用
IF 1.1 4区 医学
Cleft Palate-Craniofacial Journal Pub Date : 2025-05-01 Epub Date: 2024-02-01 DOI: 10.1177/10556656241228124
Xi Chen, Zhibo Zhou, Yixin Li, Siyue Wang, Enci Xue, Xueheng Wang, Hexiang Peng, Meng Fan, Mengying Wang, Xueying Qin, Yiqun Wu, Jing Li, Hongping Zhu, Dafang Chen, Yonghua Hu, Terri H Beaty, Tao Wu
{"title":"Detecting Gene-Gene Interaction among DNA Repair Genes in Chinese non-Syndromic Cleft lip with or Without Palate Trios.","authors":"Xi Chen, Zhibo Zhou, Yixin Li, Siyue Wang, Enci Xue, Xueheng Wang, Hexiang Peng, Meng Fan, Mengying Wang, Xueying Qin, Yiqun Wu, Jing Li, Hongping Zhu, Dafang Chen, Yonghua Hu, Terri H Beaty, Tao Wu","doi":"10.1177/10556656241228124","DOIUrl":"10.1177/10556656241228124","url":null,"abstract":"<p><p>ObjectiveThe objective of this study is to investigate the gene-gene interactions associated with NSCL/P among DNA repair genes.DesignThis study included 806 NSCL/P case-parent trios from China. Quality control process was conducted for genotyped single nucleotide polymorphisms (SNPs) located in six DNA repair genes (<i>ATR</i>, <i>ERCC4</i>, <i>RFC1</i>, <i>TYMS</i>, <i>XRCC1</i> and <i>XRCC3</i>). We tested gene-gene interactions with Cordell's method using statistical package TRIO in R software. Bonferroni corrected significance level was set as <i>P </i>= 4.24 × 10<sup>-4</sup>. We also test the robustness of the interactions by permutation tests.SettingNot applicable.Patients/ParticipantsA total of 806 NSCL/P case-parent trios (complete trios: 682, incomplete trios: 124) with Chinese ancestry.InterventionsNot applicable.Main Outcome Measure(s)Not applicable.ResultsA total of 118 SNPs were extracted for the interaction tests. Fourteen pairs of significant interactions were identified after Bonferroni correction, which were confirmed in permutation tests. Twelve pairs were between <i>ATR</i> and <i>ERCC4</i> or <i>XRCC3</i>. The most significant interaction occurred between rs2244500 in <i>TYMS</i> and rs3213403 in <i>XRCC1</i>(<i>P</i> = 8.16 × 10<sup>-15</sup>).ConclusionsThe current study identified gene-gene interactions among DNA repair genes in 806 Chinese NSCL/P trios, providing additional evidence for the complicated genetic structure underlying NSCL/P. <i>ATR</i>, <i>ERCC4</i>, <i>XRCC3</i>, <i>TYMS</i> and <i>RFC1</i> were suggested to be possible candidate genes for NSCL/P.</p>","PeriodicalId":49220,"journal":{"name":"Cleft Palate-Craniofacial Journal","volume":" ","pages":"863-869"},"PeriodicalIF":1.1,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139673357","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Parental Stress, Infant Feeding and Well-being in Families Affected by Cleft Lip and/or Cleft Palate: The Impact of Early Follow-up. 受唇裂和/或腭裂影响家庭的父母压力、婴儿喂养和福祉:早期随访的影响。
IF 1.1 4区 医学
Cleft Palate-Craniofacial Journal Pub Date : 2025-05-01 Epub Date: 2024-02-21 DOI: 10.1177/10556656241231524
Nina Ellefsen Lindberg, Nina Margrethe Kynø, Kristin Billaud Feragen, Are Hugo Pripp, Kim Alexander Tønseth
{"title":"Parental Stress, Infant Feeding and Well-being in Families Affected by Cleft Lip and/or Cleft Palate: The Impact of Early Follow-up.","authors":"Nina Ellefsen Lindberg, Nina Margrethe Kynø, Kristin Billaud Feragen, Are Hugo Pripp, Kim Alexander Tønseth","doi":"10.1177/10556656241231524","DOIUrl":"10.1177/10556656241231524","url":null,"abstract":"<p><p>ObjectiveTo document the impact of early follow-up by specialized cleft nurses (SCNs) provided to families affected by cleft lip and/or palate (CL/P) and the status of parental stress, infant feeding and well-being.DesignProspective inclusion of a control group, which only received standard care, followed by an intervention group that also received early SCN follow-up.SettingThe cleft lip and palate team at Oslo University Hospital, Norway.ParticipantsSeventy families (69 mothers and 57 fathers) distributed into an intervention group (n = 32) and a control group (n = 38).InterventionSCNs provided a consultation at the maternity ward and a follow-up conversation by phone or face-to-face at scheduled times for six months.Outcome measuresParental Stress Index (PSI), Perceived Stress Scale (PSS-14), feeding questionnaire, survey of infant diets, weight percentiles.ResultsThe mothers reported higher stress scores than the fathers, but in the control group only in the PSI parent domain at T2 and T3 (<i>P</i> = .007, <i>P</i> = .018). Infants in the intervention group used pacifiers less frequently than in the control group (55.2% vs. 81.1%, <i>P</i> = .023). Otherwise, no significant differences were found between the groups. Overall, the infants received less breast milk than norms.ConclusionContextual strategies for early follow-up of families affected by clefts need to be developed, with an emphasis on involving fathers and those parents reporting elevated stress and/or feeding difficulties. There is a need for diagnosis-specific guidelines about the use of pacifiers as well as collaboration between the health professionals involved to increase breastmilk feeding.</p>","PeriodicalId":49220,"journal":{"name":"Cleft Palate-Craniofacial Journal","volume":" ","pages":"882-893"},"PeriodicalIF":1.1,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139933767","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
What Parents of Children Born with a Cleft Lip and/or Palate Want to Know About the Care for their Child. 先天性唇裂和/或腭裂患儿的父母想知道的子女护理问题》(What Parents of Children Birth with a Cleft Lip and/or Palate Want to Know About the Care for their Child.
IF 1.1 4区 医学
Cleft Palate-Craniofacial Journal Pub Date : 2025-05-01 Epub Date: 2024-01-18 DOI: 10.1177/10556656241227355
F A C J Heijsters, M D van Eick, F van Nassau, M Bouman, Corstiaan C Breugem, M C de Bruijne, M G Mullender, J P W Don Griot
{"title":"What Parents of Children Born with a Cleft Lip and/or Palate Want to Know About the Care for their Child.","authors":"F A C J Heijsters, M D van Eick, F van Nassau, M Bouman, Corstiaan C Breugem, M C de Bruijne, M G Mullender, J P W Don Griot","doi":"10.1177/10556656241227355","DOIUrl":"10.1177/10556656241227355","url":null,"abstract":"<p><strong>Objective: </strong>Adequate health information that matches the needs of care recipients is a prerequisite for patient-centered care. To facilitate the provision of tailored and timely information, it isimportant to understand the information needs of parents of children and adolescents with cleft lip and/or palate (CL/P) themselves, and in addition they were asked how they experienced the provided care-related information.</p><p><strong>Design: </strong>A cross-sectional study employing questionnaires and semi-structured interviews.</p><p><strong>Setting: </strong>Participants were recruited from a cleft palate-craniofacial care unit in a major tertiary hospital in the Netherlands.</p><p><strong>Participants: </strong>Participants were parents or guardians of children with CL/P, and two adolescents with CLP. They were recruited through the outpatient clinic during multidisciplinary consultation or after clinical admission.</p><p><strong>Results: </strong>In total, fifty-five questionnaires were completed by parents or guardians and eleven interviews were conducted with nine parents of children with CL/P and two adolescents with CL/P. In general, participants reported to be satisfied with provided information during hospital admission or multidisciplinary cleft team consultations (mean 8.0, scale 0-10). In addition, 25.5% (n = 14) indicated that information to prepare for hospital admission was lacking (eg, practical information). Thematic qualitative analysis yielded five main information needs: 1) Clear communication during the care process, 2) Overview of the care trajectory, 3) Specific care plan information, 4) Presentation of information and 5) Guidance and support.</p><p><strong>Conclusions: </strong>Our findings emphasize the importance of gaining insights into wishes and information needs from care recipients who can provide insights in their information needs. With these findings, information provision should be redesigned to improve and to foster the further transition to family-centered care.</p>","PeriodicalId":49220,"journal":{"name":"Cleft Palate-Craniofacial Journal","volume":" ","pages":"853-862"},"PeriodicalIF":1.1,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12106931/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139492563","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Validity of the Cleft Aesthetic Rating Scale Does Not Improve with Inclusion of Fixed Scores for Atypical Outcomes. 裂隙美学评分量表的有效性并未因纳入非典型结果的固定分数而提高。
IF 1.1 4区 医学
Cleft Palate-Craniofacial Journal Pub Date : 2025-05-01 Epub Date: 2024-01-18 DOI: 10.1177/10556656231221657
Y Vroom, N S S Kornmann, D G M Mosmuller, F B Niessen, J P W Don Griot
{"title":"Validity of the Cleft Aesthetic Rating Scale Does Not Improve with Inclusion of Fixed Scores for Atypical Outcomes.","authors":"Y Vroom, N S S Kornmann, D G M Mosmuller, F B Niessen, J P W Don Griot","doi":"10.1177/10556656231221657","DOIUrl":"10.1177/10556656231221657","url":null,"abstract":"<p><p>ObjectiveThe Cleft Aesthetic Rating Scale (CARS) is a valid tool to assess the aesthetic outcome after unilateral cleft lip and palate (UCLP) repair. The goal of this study was to investigate whether the reliability of CARS increases by including fixed rates for atypical outcomes such as a smaller nostril, lower vermillion border or whistling deformity.Design197 patients with UCLP who underwent cleft repair were included. Three cleft experts rated the post-operative photos using the original CARS, followed by a second assessment employing the modified CARS.SettingMedisch Centrum Leeuwarden, Universitair Medisch Centrum Groningen, Radboud Universitair Medisch Centrum and Amsterdam University Medical Center.PatientsPhotographs of 16- to 25-year-old patients with repaired UCLP.InterventionsTwo separate assessments using the original and modified CARS.Main outcome measuresThe Intraclass Correlation Coefficient (ICC) was used to test inter-rater reliability of the original and modified version of the CARS.ResultsThe reported ICC for the nose scored by means of the original and modified CARS were 0.68 (95% CI 0.62-0.74) and 0.66 (95% CI 0.59-0.72) respectively. The reported ICC for the lip assessed with the original and modified CARS were 0.53 (95% CI 0.33-0.67) and 0.57 (95% CI 0.34-0.72) respectively.ConclusionsNo significant difference was found between the original and modified ICC of the nose and lip. The implementation of the fixed rates did not result in an increased reliability of the CARS. Therefore, we recommend the utilization of the original CARS.</p>","PeriodicalId":49220,"journal":{"name":"Cleft Palate-Craniofacial Journal","volume":" ","pages":"725-729"},"PeriodicalIF":1.1,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139492561","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Sidedness in Unilateral Orofacial Clefts: A Systematic Scoping Review. 单侧口面裂的偏侧性:系统性范围审查
IF 1.1 4区 医学
Cleft Palate-Craniofacial Journal Pub Date : 2025-05-01 Epub Date: 2023-12-13 DOI: 10.1177/10556656231221027
Matthew Fell, Daniel Bradley, Ambika Chadha, Sophie Butterworth, Amy Davies, Craig Russell, Bruce Richard, Yvonne Wren, Sarah Lewis, David Chong
{"title":"Sidedness in Unilateral Orofacial Clefts: A Systematic Scoping Review.","authors":"Matthew Fell, Daniel Bradley, Ambika Chadha, Sophie Butterworth, Amy Davies, Craig Russell, Bruce Richard, Yvonne Wren, Sarah Lewis, David Chong","doi":"10.1177/10556656231221027","DOIUrl":"10.1177/10556656231221027","url":null,"abstract":"<p><p>ObjectiveAn overview of the literature relating to the sidedness of unilateral cleft lip with or without cleft palate to map current knowledge on the cause and impact of directional asymmetry.DesignScoping review with a systematic search of Medline and Embase from inception to May 2023.Patients, ParticipantsHumans born with a left or right unilateral cleft lip with or without a cleft palate.Main Outcome MeasuresCleft sidedness as a co-occurrence, an outcome or an exposure.ResultsForty studies were eligible for inclusion and confirmed the predilection for the occurrence of left sided cleft lips; 12 studies reported cleft sidedness co-occurring with another phenotype, 11 studies report sidedness as an outcome and 17 studies as an exposure. Phenotypes which were reported to co-occur with either left or right sided clefts included congenital dental anomalies, handedness and additional congenital anomalies. Variables investigated as a potential cause of left or right sided clefts as an outcome included chromosomal anomalies, genetic variants and environmental factors. Outcomes investigated in relation to cleft sidedness as an exposure included facial anatomical features, facial growth, educational attainment, functional and psychological characteristics. More studies showed worse outcomes in right sided clefts versus left sided clefts than vice versa, although studies were inconsistent, and a quality assessment was not performed.ConclusionsThe field of cleft sidedness research is expanding and there are promising early findings to differentiate cause and outcome by sidedness of the cleft.</p>","PeriodicalId":49220,"journal":{"name":"Cleft Palate-Craniofacial Journal","volume":" ","pages":"730-743"},"PeriodicalIF":1.1,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12106926/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138811986","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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