This career development award seeks to provide the advanced knowledge, skills, and experience for the candidate's career transition to an independent physician-investigator researcher. His long-term goal is to use mixed methods to measure and improve patient/family-centered outcomes for critically and chronically ill children, especially around difficult or divisive decisions. With a background in pediatric critical care medicine, ethics, and quantitative clinical research, the candidate has begun to develop the knowledge-base and skills necessary for this goal. This award proposal details a 4-year scope of research through which he will gain the foundation for future research endeavors. Specifically, the goals of this proposal are to: 1) conduct a novel research project under the mentorship of an interdisciplinary team of expert researchers; 2) acquire expertise in qualitative, translational, and other methodologies through firsthand experience, didactic interactions with mentors, and graduate level coursework; 3) build a network of colleagues and collaborators within Columbia University and elsewhere through this research and participation at national meetings; and 4) prepare and submit a federal research grant with a translational focus, based upon the skills and findings from this award period. The specific research project through which he will accomplish these goals addresses the unmet need for decision support around whether or not to initiate children with chronic respiratory failure and other life- limiting conditions on chronic ventilation.
The specific aims are: 1) Determine the decision quality and needs of families facing whether to initiate their child on chronic ventilation; 2) Assess financial burdens relevant for family decision making around chronic ventilation; and 3) Develop and pilot test information and decision support tools for families deciding whether to initiate their child on chronic ventilation.

Public Health Relevance

The decision of whether or not to initiate a child with chronic respiratory failure and other life-limiting conditions on potentially life-sustaining chronic ventilation is momentous for the child and family and can be difficult and ambiguous for the family and clinician. Despite the gravity and ambiguity of decisions around chronic ventilation, no information or decision support tools exist to augment shared decision making for families and clinicians. Such tools would promote better informed, higher quality decisions, more realistic expectations, greater decision satisfaction for families and clinicians, and avoid initiating a hig-intensity, on-going intervention when there would be negligible benefit for the child.

National Institute of Health (NIH)
Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD)
Mentored Patient-Oriented Research Career Development Award (K23)
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National Institute of Child Health and Human Development Initial Review Group (CHHD)
Program Officer
Jenkins, Tammara L
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Columbia University (N.Y.)
Schools of Medicine
New York
United States
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Koncicki, Monica L; Zachariah, Philip; Lucas, Adam R et al. (2018) A multi-institutional analysis of children on long-term non-invasive respiratory support and their outcomes. Pediatr Pulmonol 53:498-504
Edwards, Jeffrey D; Panitch, Howard B; Constantinescu, Andrei et al. (2018) Survey of financial burden of families in the U.S. with children using home mechanical ventilation. Pediatr Pulmonol 53:108-116
Geneslaw, Andrew S; Jia, Haomiao; Lucas, Adam R et al. (2017) Pediatric intermediate care and pediatric intensive care units: PICU metrics and an analysis of patients that use both. J Crit Care 41:268-274
Edwards, Jeffrey D; Voigt, Louis P; Nelson, Judith E (2017) Ten key points about ICU palliative care. Intensive Care Med 43:83-85
Edwards, Jeffrey D; Morris, Marilyn C; Nelson, Judith E et al. (2017) Decisions around Long-term Ventilation for Children. Perspectives of Directors of Pediatric Home Ventilation Programs. Ann Am Thorac Soc 14:1539-1547
Edwards, Jeffrey D; Lucas, Adam R; Boscardin, W John et al. (2017) Repeated Critical Illness and Unplanned Readmissions Within 1 Year to PICUs. Crit Care Med 45:1276-1284
Edwards, Jeffrey D (2017) Anticipatory Guidance on the Risks for Unfavorable Outcomes among Children with Medical Complexity. J Pediatr 180:247-250
Edwards, Jeffrey D; Houtrow, Amy J; Lucas, Adam R et al. (2016) Children and Young Adults Who Received Tracheostomies or Were Initiated on Long-Term Ventilation in PICUs. Pediatr Crit Care Med 17:e324-34