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

儿科睡眠呼吸障碍的共同决策和结果

• 批准号: 8840591
• 负责人: Emily Frances Boss
• 金额: $ 15.77万
• 依托单位: JOHNS HOPKINS UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2014
• 资助国家: 美国
• 起止时间: 2014-05-01 至 2019-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8840591
• 关键词: Shared; Decision; Making; Outcomes; Pediatric

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.

描述（由申请人提供）：Emily Boss博士是Johns Hopkins大学医学院耳鼻喉科和颈部手术系的助理教授。她接受了小儿耳鼻喉科研究的奖学金，她的临床实践着重于评估和治疗儿童的言语和睡眠障碍。她以前完成了M.P.H.在约翰·霍普金斯彭博公共卫生学院。通过该计划，她获得了在流行病学，健康差异，健康政策，管理和组织领导力主题的扎实教育基础。 Boss博士在她在居住培训期间开发的以患者为中心的结果研究组合的基础上，应用了公共卫生学位的课程，以创建一项研究轨迹，评估健康差异，卫生服务利用率以及儿科耳鼻喉科和手术的患者护理经验。在这项指导的临床研究者奖的支持下，Boss博士试图通过将她对小儿睡眠成果的兴趣融合到致力于推进公平且以患者为中心的手术护理的承诺来提高她的方法论技巧和研究独立性。她最终的目标是成为研究所有儿科手术学科的研究，以患者为中心的结果，以患者为中心的结果以及医疗保健质量的研究。位于约翰霍普金斯大学（Johns Hopkins University）的多样化，建立了良好的研究和临床环境中，Boss Will Will Will Will Will将在医学院和公共卫生学院内的合作来丰富她的科学和培训经验。她精心组装的专家指导和咨询团队的每个人都具有与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的免费内容和方法论专业知识。 Boss博士将沉浸在耳鼻喉科和颈部外科系，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，以便获得这些社区内部教师网络的方法论和主题专业知识。 Boss博士为职业发展制定了动态计划，该计划通过高级课程，强化研讨会和研讨会，独立研究，案例会议和大回合以及全国会议参与来结合教育机会。在比较有效性研究方法论的保护下，应用于以患者为中心的结果研究，Boss博士将最具体地将研究培训集中在学习创新研究设计方法上，整合技术以传播有关手术治疗，决策科学模型和分析的证据，决策科学模型，分析，对风险的沟通和福利，以使风险的证据在决策方法和高级统计方法论中进行较大的差异分析，以进行分析。通过这项培训，这一指导奖将为Boss博士提供她成为与儿科手术护理有关的以患者为中心的结果研究的独立研究者和领导者所需的技能。在这项建议中，Boss博士开发了一种新颖的方法来评估父母面临有关腺孔切除术的决策的决策和质量成果的方法。 Boss博士将评估与“典型”护理和咨询对父母护理和结果经验的影响，手术或观察的治疗决策以及遵守治疗建议的影响相比，实施共同决策的影响。在AIM 1中，Boss博士将使用录音来评估父母和提供者对SDB儿童的“常规”护理遭遇期间所表达的共同决策行为。在AIM 2中，她将开发共同的决策援助，该援助与对父母的观察相比，披露了有关手术风险和手术风险和利益的证据。这种简单的援助将纳入每个患者的遇到。然后，她将根据每种交流方法进行比较和评估父母报告的结果和治疗决策。她的最终目标将结合次要分析，以评估社会人口统计学对父母报告的结果和决策的影响。 Boss博士将吸引医疗提供者和家庭的利益相关者在整个项目的整个过程中告知她的研究问题，并开发和修改共同的决策援助。这项工作将为改善现实世界中的外科医生沟通的策略提供信息，并提高使用最佳证据的SDB儿童进行选择性腺丝切除术的决定质量。用腺孔切除术对小儿SDB进行治疗将被用作评估手术决策的试验例子；但是，发现儿科手术的所有学科都应具有广泛的影响。