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

描述(申请人提供)：艾米丽·博斯博士是约翰·霍普金斯大学医学院耳鼻咽喉头颈外科的助理教授。她在儿科耳鼻喉科接受过团契训练，她的临床实践重点是评估和治疗儿童的言语和睡眠障碍。她之前在约翰霍普金斯大学布隆伯格公共卫生学院完成了M.P.H.学位。通过这个项目，她在流行病学、健康差距、卫生政策、管理和组织领导力等主题上获得了坚实的教育基础。基于她在住院医师培训期间开发的以患者为中心的结果研究组合，Boss博士应用她的公共卫生学位课程创建了一个研究轨迹，评估健康差距、医疗服务利用率以及儿科耳鼻喉科和外科手术患者的护理体验。在导师临床研究员奖的支持下，博斯博士寻求通过将她对儿科睡眠结果的兴趣与她对促进公平和以患者为中心的外科护理的承诺相结合，来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领域的领导者，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质量的科学。在约翰·霍普金斯大学多样化、成熟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中的每个人都在与Boss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业知识。博斯博士将沉浸在耳鼻喉科-头颈外科、卫生服务和结果研究中心以及阿姆斯特朗患者安全和质量研究所的多学科环境中，以便获得这些社区内教员网络的方法和专题专业知识。博斯博士创建了一个动态的职业发展计划，通过高级课程作业、密集的研讨会和研讨会、独立研究、案例会议和大型轮次会议以及全国会议的参与，将教育机会结合起来。在适用于以患者为中心的结果研究的比较有效性研究方法论的框架下，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、整合传播有关外科治疗的证据的技术、决策科学建模和分析、风险和收益的沟通以增强证据在决策中的使用，以及先进的统计方法来对脆弱的患者亚群进行分析。通过这次培训，这项有指导的奖项将为博斯博士提供所需的技能，使她成为与儿科外科护理相关的以患者为中心的结局研究的独立调查员和领导者。在这项提案中，Boss博士开发了一种新的方法来评估父母面临选择手术治疗睡眠呼吸障碍(SDB)儿童的扁桃体切除手术的决策和质量结果。博斯博士将评估实施共享决策援助的效果，并将其与“典型”护理和咨询对父母的护理和结果体验、手术或观察的治疗决策以及对治疗建议的遵守的影响进行比较。在目标1中，Boss博士将使用录音来评估父母和提供者在患有SDB的儿童的“通常”护理接触中所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，它揭示了手术的风险和好处的证据。这一简单的帮助将被纳入到每一次与患者的会面中。然后，她将比较和评估父母报告的结果和治疗决定，遵循这些沟通方法的每一种。她的最终目标将包括二次分析，以评估社会人口结构对父母报告的结果和决定的影响。博斯博士将动员利益相关者，包括医疗提供者和家庭，在整个项目过程中向她提出研究问题，并开发和修改共享的决策辅助工具。这项工作将为在真实世界环境中改善外科医生与家庭之间的沟通提供参考，并利用可获得的最佳证据提高对患有SDB的儿童进行选择性腺体扁桃体切除术的决策质量。腺体扁桃体切除术治疗儿童SDB将作为评估手术决策的试点例子；然而，研究结果应该对儿科外科的所有学科都有广泛的影响。

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.