Validation of a Framework for Shared Decision-Making in Pediatrics

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PROJECT SUMMARY A primary objective of shared decision-making (SDM) is to ensure medical decision-making incorporates the preferences of the patients affected by the medical decision. SDM and tools that support its use have been found to improve patients' knowledge of outcomes, risks, and their selection of an option that matches their values. Consequently, SDM has emerged as the standard decision-making model in medicine. However, its implementation in the field of pediatrics has been hampered by an incomplete understanding of how SDM should manifest in decision-making scenarios common to pediatrics. [For instance, implementation of SDM in pediatrics must accommodate multiple goals, such as protecting the child, honoring the emerging autonomy of adolescents, and respecting parental values and decision-making authority, which distinguishes it from the implementation of SDM with adults where the singular goal is to protect or promote patient autonomy]. There is no model for the implementation of SDM in pediatrics that comprehensively addresses these and other features common to pediatric decision-making. The primary goal of this project is to empirically refine a framework for implementing SDM in pediatrics using a diverse set of decision-making scenarios across multiple pediatric disciplines [and child ages]. This framework includes 4 steps. The first 3 steps pose a question to the clinician, with the answers directing the clinician further along the framework (Step 1 (Medical Reasonableness): does the decision include more than one medically reasonable option?; Step 2 (Benefit-Burden): does one option have a favorable medical benefit- burden ratio compared to other options?; Step 3 (Preference Sensitivity): how preference-sensitive are the options?). Step 4 (Calibration) provides direction on the specific SDM approach to use for the decision under consideration based on the answers to Steps 1-3 as well as other decisional characteristics present. Our specific aims are to (1) to assess the applicability of the pediatric SDM framework across a range of medical decisions [and child ages] by (a) videotaping problem-oriented medical encounters (N=[30]) involving children [≤17] years old in 6 pediatric clinical services (craniofacial, neonatology, pulmonary, hematology/oncology, pediatric intensive care, and general pediatrics/hospital medicine), (b) conducting [75] post-encounter interviews with clinician (N=30), parent (N=30) [and 11-17 year old child (N=15)] participants using video-stimulated recall to identify gaps in the SDM framework, and (c) revising the framework accordingly; (2) to assess the face and content validity of the revised pediatric SDM framework by conducting 4 focus groups to elicit input on the content and components of the revised framework. This R03 application will provide evidence for a valid process for implementing SDM in pediatrics. The results of this proposal will inform a future R01-funded study to develop, evaluate, and prospectively test a tool to measure SDM in pediatrics.