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

描述（由申请人提供）：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系的助理教授。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。她以前完成了MPH。在约翰霍普金斯彭博公共卫生学院。通过这个计划，她获得了在流行病学，健康差距，卫生政策，管理和组织领导的主题坚实的教育基础。基于她在住院医师培训期间开发的以患者为中心的成果研究组合，Boss博士应用她的公共卫生学位课程创建了一个研究轨迹，评估健康差异，卫生服务利用率以及儿科耳鼻喉科和外科护理的患者体验。在这个指导临床研究者奖的支持下，博斯博士寻求通过将她对儿科睡眠结果的兴趣与她对推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研究的国家领导者，提高以患者/家庭为中心的科学，以患者为中心的结果，以及所有儿科外科学科的医疗质量。博斯博士将在约翰霍普金斯大学的多元化，完善的研究和临床环境中，利用她在医学院和公共卫生学院的合作，以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一个人都拥有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的免费内容和方法学专业知识。博士博斯将沉浸在耳鼻咽喉头颈外科系，卫生服务和成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，以获得这些社区内教师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，通过先进的课程，密集的讲习班和研讨会，独立学习，案例会议和大型圆桌会议，以及参加全国会议，结合教育机会。在应用于以患者为中心的结局研究的比较有效性研究方法的保护伞下，博士博斯将把她的研究培训重点放在学习创新的研究设计方法上，整合传播手术治疗证据的技术，决策科学建模和分析，风险和益处的沟通，增强决策中证据的使用，和先进的统计方法，对弱势患者亚组进行分析。通过这次培训，这个指导奖将为博士提供她需要成为一个独立的研究者和领导者在以患者为中心的结果研究与儿科手术护理的技能。在这项提案中，博斯博士开发了一种新的方法来评估父母的决策和质量结果，这些父母面临着对患有睡眠呼吸障碍（SDB）的儿童进行选择性手术治疗的决定。博斯博士将评估实施共享决策辅助工具的效果，并与“典型”护理和咨询对父母护理体验和结果、手术或观察的治疗决定以及对治疗建议的依从性的影响进行比较。在目标1中，博斯博士将使用录音来评估父母和服务提供者在“通常”照顾SDB儿童时所表达的共同决策行为。在目标2中，她将开发一种共享的决策辅助工具，与对父母的观察相比，该工具将揭示手术风险和益处的证据。这种简单的帮助将被纳入每一个病人的遭遇。然后，她将比较和评估父母报告的结果和治疗决定后，这些通信方法。她的最终目标将包括二次分析，以评估社会人口统计学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，包括医疗服务提供者和家庭，在整个项目过程中告知她的研究问题，并开发和修改共享决策辅助工具。这项工作将为改善真实的世界环境中外科医生与家庭沟通的策略提供信息，并利用现有最佳证据提高SDB儿童选择性扁桃体切除术的决策质量。将使用腺样体扁桃体切除术治疗儿科SDB作为试点示例，以评估手术决策;然而，研究结果应在儿科外科的所有学科中具有广泛的意义。

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.