Developing an Innovative Decision Support Tool for Pediatric Neuromuscular Scoliosis

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PROJECT SUMMARY/ABSTRACT This proposal describes a 5-year research training program for Jody Lin, MD, MS, a pediatric hospitalist at the University of Utah. Dr. Lin’s long-term goal is to become an independent physician scientist who develops scalable decision support tools to improve outcomes for children with medical complexity through shared decision making (SDM). The award will support Dr. Lin to accomplish the following goals: 1) Gain expertise in the psychology of decision making, 2) Undergo advanced training in risk communication strategies in settings of uncertainty, 3) Obtain experience in applying implementation science to the design of decision support tools, 4) Acquire leadership skills in assembling and managing multidisciplinary scientific teams. Dr. Lin will be supported by an outstanding team of mentors who are dedicated to her success and possess diverse expertise in decision science (Dr. Fagerlin), health communication (Dr. Kaphingst), implementation science (Dr. Asch), and pediatric orthopaedics (Dr. Narayanan). Dr. Lin also has three advisors with expertise in children with medical complexity, career development, and biostatistics. In spite of broad recognition that SDM is a promising approach to improving outcomes for children with medical complexity, little is known about how to improve SDM for these children in the clinical setting. This project will develop and test the feasibility of a novel decision support tool on surgical treatment decision making for children with neuromuscular scoliosis (NMS). The aims of the project are as follows. In aim 1, Dr. Lin will apply new skills in health communication to identify effective risk communication methods to communicate uncertainty in decision making for children with NMS. In aim 2, Dr. Lin will design a decision support tool for use during orthopaedic consultation for children with NMS, including discoveries from aim 1. In aim 3, Dr. Lin will conduct a pilot feasibility and acceptability study of the decision support tool. This study will inform the development of a large, multicenter trial of the decision support tool for children with NMS. Through the training and research activities embedded in this proposal, Dr. Lin will address gaps in our understanding of how to support treatment decision making for children with NMS. This study will serve as a critical model for developing decision supports for clinical decisions in the growing population of children with medical complexity. Completion of the proposed activities will prepare Dr. Lin to independently lead a larger research program evaluating and developing decision support to improve outcomes for populations of children and adults with multiple comorbid conditions through better SDM.