Shared Decision-Making and Outcomes in Pediatric Sleep-Disordered Breathing

简介（由申请人提供）：Emily Boss博士是约翰霍普金斯大学医学院耳鼻喉头颈外科的助理教授。她在儿科耳鼻喉科接受过奖学金培训，她的临床实践侧重于儿童语言和睡眠障碍的评估和治疗。她之前在约翰霍普金斯大学彭博公共卫生学院完成了公共卫生硕士学位。通过这个项目，她在流行病学、健康差异、卫生政策、管理和组织领导等方面获得了坚实的教育基础。在住院医师培训期间，她建立了以患者为中心的结果研究组合，Boss博士运用她的公共卫生学位课程创建了一个研究轨迹，评估儿童耳鼻喉科和外科的健康差异、卫生服务利用和患者护理体验。在此指导临床研究者奖的支持下，Boss博士通过将她对儿科睡眠结果的兴趣与她对推进公平和以患者为中心的手术护理的承诺结合起来，寻求提高她的方法技能和研究独立性。她的最终目标是成为全国研究的领导者，以提高所有儿科外科学科的以患者/家庭为中心，以患者为中心的结果和医疗保健质量。在约翰霍普金斯大学多元化、完善的研究和临床环境中，博斯博士将利用她在医学院和公共卫生学院的合作来丰富她的科学和培训经验。她精心组建的专家指导和咨询团队的每一位成员都在与博斯博士的建议相关的比较有效性和以患者为中心的结果研究方面拥有互补的内容和方法专长。博斯博士将投身于耳鼻喉头颈外科、健康服务和结果研究中心以及阿姆斯特朗患者安全与质量研究所的多学科环境中，以便在这些社区中获得教师网络的方法学和专题专业知识。博斯博士创造了一个动态的职业发展计划，通过高级课程、密集的讲习班和研讨会、独立研究、案例会议和大型会议以及参加全国会议，将教育机会结合起来。在应用于以患者为中心的结果研究的比较有效性研究方法的保护下，博斯博士将把她的研究培训重点放在学习创新的研究设计方法、整合传播手术治疗证据的技术、决策科学建模和分析、风险和收益的沟通，以提高决策中证据的使用。以及先进的统计方法来对弱势患者亚群进行分析。通过这次培训，这个导师奖将为博斯博士提供她所需的技能，使她成为一名独立的研究者，并在与儿科外科护理相关的以患者为中心的结果研究方面发挥领导作用。在这项提案中，Boss博士开发了一种新的方法来评估父母在选择选择性手术治疗患有睡眠呼吸障碍（SDB）儿童的腺扁桃体切除术时的决策和质量结果。博斯博士将评估实施共同决策辅助的效果，并将其与“典型”护理和咨询的效果进行比较，以评估父母对护理和结果的体验、手术或观察的治疗决定以及对治疗建议的依从性。在目标1中，Boss博士将使用录音来评估在SDB儿童的“常规”护理中父母和提供者表达的共同决策行为。在目标2中，她将开发一个共享的决策辅助工具，与父母观察相比，揭示手术风险和益处的证据。这个简单的辅助将被纳入每一个病人的治疗。然后，她将比较和评估每一种沟通方法后家长报告的结果和治疗决定。她的最终目标将包括二次分析，以评估社会人口统计对父母报告的结果和决定的影响。博斯博士将与利益相关者（包括医疗提供者和家庭）合作，在整个项目过程中告知她的研究问题，并开发和修改共享的决策辅助工具。这项工作将为在现实世界中改善外科医生与家庭沟通的策略提供信息，并利用现有的最佳证据提高SDB患儿择期腺扁桃体切除术的决策质量。采用腺扁桃体切除术治疗儿童SDB将作为评估手术决策的试点案例；然而，研究结果应该对所有儿科外科学科具有广泛的影响。

DESCRIPTION (provided by applicant): Dr. Emily Boss is an Assistant Professor in the Department of Otolaryngology-Head and Neck Surgery at the Johns Hopkins University School of Medicine. She is fellowship-trained in Pediatric Otolaryngology, and her clinical practice focuses on evaluation and treatment of speech and sleep disorders in children. She previously completed an M.P.H. at the Johns Hopkins Bloomberg School of Public Health. Through this program she obtained a solid educational foundation in topics of epidemiology, health disparities, health policy, administration, and organizational leadership. Building on the patient-centered outcomes research portfolio she developed during her residency training, Dr. Boss applied the lessons from her public health degree to create a research trajectory evaluating health disparities, health services utilization, and patient experience of care in pediatric otolaryngology and surgery. With the support of this Mentored Clinical Investigator Award, Dr. Boss seeks to advance her methodological skills and research independence by merging her interests in pediatric sleep outcomes with her commitment to advancing equitable and patient-centered surgical care. She ultimately aims to be a national leader in research that improves the sciences of patient/family-centeredness, patient- centered outcomes, and healthcare quality for all pediatric surgical disciplines. Situated within the diverse, well-established research and clinical environment at Johns Hopkins University, Dr. Boss will utilize her collaborations within the School of Medicine and the School of Public Health to enrich her scientific and training experience. Each individual of her carefully-assembled expert mentoring and advisory team possesses complimentary content and methodological expertise in comparative effectiveness and patient-centered outcomes research relevant to Dr. Boss's proposal. Dr. Boss will immerse herself in the multidisciplinary environments of the Department of Otolaryngology-Head and Neck Surgery, the Center for Health Services and Outcomes Research, and the Armstrong Institute for Patient Safety and Quality in order to access the methodological and topical expertise of the faculty network within these communities. Dr. Boss has created a dynamic plan for career development which combines educational opportunities through advanced coursework, intensive workshops and seminars, independent study, case conferences and grand rounds, and national conference participation. Under the umbrella of comparative effectiveness research methodology as applied to patient-centered outcomes research, Dr. Boss will focus her research training most specifically on learning innovative study design approaches, integrating techniques for disseminating evidence about surgical treatment, decision science modeling and analysis, communication of risks and benefits that enhances use of evidence in decision-making, and advanced statistical methodology to conduct analysis for vulnerable patient subgroups. With this training, this mentored award will provide Dr. Boss with the skills that she needs to become an independent investigator and leader in patient-centered outcomes research related to pediatric surgical care. In this proposal, Dr. Boss has developed a novel approach to evaluation of decision-making and quality outcomes of parents facing decisions about elective surgical care with adenotonsillectomy for children with sleep-disordered breathing (SDB). Dr. Boss will evaluate the effects of implementing a shared decision- making aid compared to the effects of "typical" care and counseling on parent experience of care and outcomes, treatment decisions for either surgery or observation, and adherence to treatment recommendations. In Aim 1, Dr. Boss will use audio recordings to evaluate shared decision-making behaviors expressed by parents and providers during "usual" care encounters for children with SDB. In Aim 2, she will develop a shared decision-making aid which discloses evidence on risk and benefit of surgery compared to observation to parents. This simple aid will be incorporated into each patient encounter. She will then compare and evaluate parent-reported outcomes and treatment decisions following each of these communication approaches. Her final aim will incorporate secondary analyses to evaluate effects of social demographics on parent-reported outcomes and decisions. Dr. Boss will engage stakeholders, both medical providers and families, to inform her research questions throughout the course of this project and to develop and modify the shared decision-making aid. This work will inform strategies to improve surgeon-family communication in real- world settings and enhance the quality of decisions made for elective adenotonsillectomy in children with SDB using the best available evidence. Treatment of pediatric SDB with adenotonsillectomy will be used as a pilot example to assess surgical decision-making; however findings should have broad implications across all disciplines of pediatric surgery.