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.
Although adenotonsillectomy is the most common surgical procedure used to treat sleep- disordered breathing, for many children the scientific evidence supporting long-term benefits of surgery compared to watchful waiting is limited. Shared decision-making may facilitate treatment decisions and improve quality of care for families of children with SDB. By comparing the effects of shared decision-making approaches to usual counseling, this study may ultimately reduce overuse, improve satisfaction, and inform evidence-based treatment decisions within pediatric surgical specialty care.