A comparative effectiveness study of speech and surgical treatments using a Cleft Palate Registry/Research Outcomes Network.

使用腭裂登记/研究成果网络进行言语和手术治疗的比较有效性研究。

• 批准号: 10356125
• 负责人: KATHY L CHAPMAN
• 金额: $ 103.83万
• 依托单位: UNIVERSITY OF UTAH
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-03-01 至 2025-02-28
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10356125
• 关键词: 3 year old; 5 year old; Address; Adverse event; Ambulatory Care; Appearance; Area; Behavior Therapy; Biometry; Caring; Child; Childhood; Cleft Lip; Cleft Palate; Clinical; Clinical Research; Collaborations; Common Data Element; Communities; Comparative Effectiveness Research; Congenital Abnormality; Data; Data Collection; Data Reporting; Data Set; Decision Making; Dental; Dentition; Development; Effectiveness; Electronic Health Record; Evidence based practice; Exhibits; Fistula; Funding; Future; Goals; Health; Hearing; Individual; Infrastructure; Interdisciplinary Study; Intervention; Intervention Studies; Knowledge; Language; Language Therapy; Measurement; Medical; Modeling; Names; National Institute of Dental and Craniofacial Research; North America; Operative Surgical Procedures; Oral; Orthodontic; Orthodontics; Otolaryngology; Outcome; Outcome Study; Outcomes Research; Outpatients; Pathway interactions; Patient Rights; Patient-Focused Outcomes; Patients; Pattern; Pediatrics; Plastic Surgical Procedures; Population; Postoperative Period; Premaxillary palate; Procedures; Production; Protocols documentation; Provider; Psychology; Registries; Reporting; Research; Research Design; Research Personnel; Sample Size; Services; Severities; Speech; Speech-Language Pathology; Strategic Planning; Subgroup; System; Techniques; Testing; Therapeutic Intervention; Time; Training; Treatment outcome; Uncertainty; Variant; Work; base; care outcomes; cleft lip and palate; clinical care; clinical investigation; clinically relevant; comorbidity; comparative effectiveness study; craniofacial; data integration; design; efficacy study; emotional adjustment; experience; feeding; follow-up; improved; inpatient service; multidisciplinary; palate repair; point of care; programs; prospective; psychosocial; recruit; repaired; social; surgery outcome; therapy design; tool

PROJECT SUMMARY Over their lifetimes, children with cleft palate + lip (CP+L) undergo numerous surgical, orthodontic, and behavioral interventions designed to lessen the impact of clefting. There is genuine uncertainty within the expert medical community about the preferred surgical approaches to cleft palate repair. As a result, treatment decisions are based on treating biases from prior training, clinical experiences, or provider expertise. The proposed project intends to compare the two most common cleft palate repair techniques, straight- line closure with intra-velar veloplasty (IVVP) and Furlow Z-plasty palatal lengthening, to determine their effect on speech outcome and on the subsequent development of fistulas, a common adverse event following surgical repair of the palate. Instead of efficacy, the study of interventions in a select population under ideal conditions, the target of the proposed study is effectiveness, the comparison of these techniques in real-world clinical settings and across the full continuum of severity and comorbidity seen in clinical care – data that are sorely needed to inform medical decision making for CP+L. In addition, we will collect detailed information on post-operative and follow-up care as well as speech-language therapy practices to illuminate the full horizon of early care practices for CP+L. To achieve this real-world data capture, we will establish a multi-institutional, point-of-care data capture system that harmonizes the practice data from leading cleft care programs across North America. The completion of this proposed project will advance knowledge about surgical approaches to CP+L as well as subsequent inpatient and outpatient care. The authentic and detailed care information about how different individuals respond to surgical interventions would help providers deliver the right care at the right time to the right patient. Better characterization of therapy interventions would inform the development of care pathways for outpatient CP+L care that have the potential to realize more informed, effective and equitable care. Finally, in addition to the direct impact on care that can be realized by the hypothesis testing proposed herein, the establishment of a point-of-care data capture clinical research registry for CP+L holds the potential to be an enduring contribution to the field and to support conduction of timely and clinically relevant research for years to come.

项目总结 在他们的一生中，患有腭裂+唇裂(CP+L)的儿童经历了无数次手术、正畸和 旨在减轻裂隙影响的行为干预。存在着真正的不确定性， 专家医学界对腭裂修复术的首选方法进行了探讨。因此，治疗 决策基于对先前培训、临床经验或提供者专业知识的偏见的处理。 这项拟议的项目旨在比较两种最常见的腭裂修复技术，直接式- 软组织瓣内成形术(IVVP)和Fllow Z成形术在腭裂手术中的应用 关于言语结果和随后发生的瘘管，这是一种常见的不良事件 腭部的外科修复手术。在理想情况下，对选定人群进行干预研究，而不是有效性 条件，建议研究的目标是有效性，这些技术在现实世界中的比较 临床设置和临床护理中看到的严重程度和共病的整个连续统-数据是 迫切需要为CP+L的医疗决策提供信息。此外，我们还将收集有关 术后和后续护理以及言语语言治疗实践，以照亮全面的地平线 CP+L的早期护理实践。为了实现这种真实世界的数据捕获，我们将建立一个多机构、 护理点数据捕获系统，协调来自领先的唇裂护理计划的实践数据 北美。 这一拟议项目的完成将促进对CP+L AS手术入路的了解 以及随后的住院和门诊护理。真实和详细的护理信息如何 不同的个体对手术干预的反应将帮助提供者在正确的地方提供正确的护理 是时候找对病人了。更好地描述治疗干预措施将为护理的发展提供信息 门诊CP+L有可能实现更知情、更有效、更公平的路径 关心。最后，除了可以通过假设检验实现的对护理的直接影响外，还提出了 在此，为CP+L建立护理点数据捕获临床研究登记具有潜力 为该领域做出持久的贡献，并支持进行及时和临床相关的研究 在未来的几年里。

项目成果

Stop Consonant Production in Children with Cleft Palate After Palatoplasty.

腭裂儿童在腭成形术后停止辅音的产生。

• DOI: 10.1177/10556656231159974
• 发表时间: 2023
• 期刊: The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
• 作者: Hardin-Jones,Mary;Chapman,KathyL;Heimbaugh,Libby;Dahill,AnnE;Cummings,Caitlin;Baylis,Adriane;HatchPollard,Sarah
• 通讯作者: HatchPollard,Sarah

Cleft Palate Repair Postoperative Management: Current Practices in the United States.

腭裂修复术后管理：美国的当前实践。

• DOI: 10.1177/10556656221146891
• 发表时间: 2024
• 期刊: The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
• 作者: Sitzman,ThomasJ;Verhey,ErikM;Kirschner,RichardE;Pollard,SarahHatch;Baylis,AdrianeL;Chapman,KathyL;CleftOutcomesResearchNETwork(CORNET)Consortium
• 通讯作者: CleftOutcomesResearchNETwork(CORNET)Consortium

Correspondence between consonant inventories obtained using modified naturalistic listening in real time (NLRT) and parent report.

使用改良自然主义实时聆听 (NLRT) 获得的辅音库存与家长报告之间的对应关系。

• DOI: 10.1016/j.jcomdis.2024.106417
• 发表时间: 2024
• 期刊: Journal of communication disorders
• 影响因子: 1.7
• 作者: Hardin-Jones,MaryA;Dahill,AnnE;Heimbaugh,Libby;Baylis,Adriane;Cummings,Caitlin;Chapman,KathyL;CleftOutcomesResearchNETwork(CORNET)Consortium
• 通讯作者: CleftOutcomesResearchNETwork(CORNET)Consortium

Factors Associated with Delayed Palatoplasty Before, During, and After the COVID-19 Pandemic.

COVID-19 大流行之前、期间和之后与延迟腭成形术相关的因素。

• DOI: 10.1097/scs.0000000000010065
• 发表时间: 2024
• 期刊: The Journal of craniofacial surgery
• 作者: Khansa,Ibrahim;Pollard,SarahHatch;Fogolin,Alyssa;Baylis,Adriane;Sitzman,ThomasJ;Chapman,KathyL;Kirschner,RichardE
• 通讯作者: Kirschner,RichardE

Transcribing toddler vocalizations: comparison of a modified naturalistic listening approach with phonetic transcription.

转录幼儿发声：修改后的自然主义听力方法与语音转录的比较。

• DOI: 10.1080/02699206.2022.2029574
• 发表时间: 2023
• 期刊: Clinical linguistics & phonetics
• 影响因子: 1.2
• 作者: Hardin-Jones,Mary;Heimbaugh,Libby;Chapman,KathyL;Baylis,Adriane;HatchPollard,Sarah
• 通讯作者: HatchPollard,Sarah