My career goal is to develop an independent research program focused on improving shared decision making for children with neurologic disease. Parents of infants with neurologic conditions frequently face life and death decisions. A good quality decision in this context is one in which clinicians and parents engage in shared decision making, a process by which clinicians provide decision-relevant medical information, and partner with parents to help them incorporate preferences for how to make trade-offs between death and life with disability. Despite the high frequency and stakes of management decisions in neonatal neurology, we lack 1) empiric data on how these choices are made and 2) tools to promote good quality decisions through shared decision making. The goal of this Mentored Clinical Scientist Research Career Development Award (K23) is to develop a targeted decision aid for parents of infants with neurologic conditions. We will first characterize decision making and prognostic discussion in a longitudinal, mixed methods study. We will enroll 50 cases, consisting of an infant, their parent(s), and their physician(s). We will follow each case along a 6-month trajectory and audio record parent-clinician conferences as they occur. To complement data from real-time discussions, we will survey and interview parents after each conference, at infant discharge, and 6 months after infant discharge or death. Clinicians will complete post-conference surveys. Data analyses will integrate quantitative and qualitative methodologies. First, we will characterize decision making processes in parent-clinician conversations using qualitative analysis and established metrics of shared decision making. We will then analyze the content of prognostic discussion?how parents and clinicians discuss expected infant outcomes? and determine how often parents and clinicians have a concordant understanding of infant prognosis. These data will directly inform the development and testing of a decision aid to enhance shared decision making for infants with neurologic conditions. We will develop the decision aid using the International Patient Decision Aids Standards, and will refine the tool through usability and cognitive testing. We will test the acceptability of the decision aid in a single-arm feasibility study. We will enroll 30 infants with neurologic conditions, their parent(s), and their physician(s) in advance of a planned goals-of-care conference. Enrolled parents will receive the decision aid in advance the conference. We will survey parents at baseline; parents and clinicians will also be surveyed following the goals-of-care conference. Upon completion of this Award, I will have the data and skillset necessary to study this intervention in a randomized control trial, which serve as the basis for a R01 submission. The rigorous training provided by this Award will prepare me well for a career dedicated to improving parent-clinician communication and decision making for infants with neurologic conditions.
Parents of infants with neurologic conditions frequently face decisions about life and death. Under the guidance of my mentors, I will characterize how these choices are made and develop an intervention to improve how providers partner with parents to make decisions for neonatal neurology patients.