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Project Information

SHARED DECISION-MAKING AND OUTCOMES IN PEDIATRIC SLEEP-DISORDERED BREATHING

Agency:
AHRQ

HHS/Agency for Healthcare Research and Quality

Project Number:
1K08HS022932-01
Contact PI / Project Leader:
BOSS, EMILY FRANCES
Awardee Organization:
THE JOHNS HOPKINS UNIVERSITY

Description

Abstract Text:
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.
Project Terms:
Behavior; Benefits and Risks; career development; Caring; Case Study; Child; Childhood; Clinical; Clinical Investigator Award; clinical practice; Collaborations; Communication; Communities; comparative effectiveness; Counseling; Decision Making; demographics; Discipline; Educational workshop; effectiveness research; Environment; Epidemiology; Evaluation; experience; Faculty; Family; Fellowship; Foundations; Head and Neck Surgery; health care quality; health care service utilization; health disparity; Health Policy; improved; Individual; innovation; Institutes; interest; Leadership; Learning; Master of Public Health; Medical; medical schools; Mentored Research Scientist Development Award; Mentors; Methodology; Modeling; multidisciplinary; novel strategies; Operative Surgical Procedures; Otolaryngology; Outcome; Outcomes and Health Services Research; Outcomes Research; Parents; patient oriented; patient safety; Patient-Focused Outcomes; Patients; Pediatric Surgical Procedures; professor; programs; Provider; Public Health Schools; Recommendation; Reporting; Research; Research Design; Research Methodology; Research Personnel; Research Training; Residencies; Science; shared decision making; skills; Sleep; Sleep Apnea Syndromes; Sleep Disorders; social; Solid; Speech; Subgroup; Surgeon; symposium; Techniques; Training; treatment as usual; Treatment outcome; Universities; Work

Details

Contact PI / Project Leader Information:
Name:  BOSS, EMILY FRANCES
Other PI Information:
Not Applicable
Awardee Organization:
Name:  THE JOHNS HOPKINS UNIVERSITY
City:  BALTIMORE    
Country:  UNITED STATES
Congressional District:
State Code:  MD
District:  07
Other Information:
Fiscal Year: 2014
Award Notice Date: 21-Apr-2014
DUNS Number: 001910777
Project Start Date: 01-May-2014
Budget Start Date: 01-May-2014
CFDA Code: 226
Project End Date: 30-Apr-2019
Budget End Date: 30-Apr-2015
Agency: ?

Agency: The entity responsible for the administering of a research grant, project, or contract. This may represent a federal department, agency, or sub-agency (institute or center). Details on agencies in Federal RePORTER can be found in the FAQ page.

HHS/Agency for Healthcare Research and Quality
Project Funding Information for 2014:
Year Agency

Agency: The entity responsible for the administering of a research grant, project, or contract. This may represent a federal department, agency, or sub-agency (institute or center). Details on agencies in Federal RePORTER can be found in the FAQ page.

FY Total Cost
2014 AHRQ

HHS/Agency for Healthcare Research and Quality

$157,494

Results

i

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