Development of a Tool to Measure the Dyadic Process of Shared Decision Making in Young Children: The Making Decisions for Kids (MADE for Kids) Survey

Background Incorporating clinician and patient perspectives in the measurement of shared decision making (SDM) is aligned with SDM’s inherently dyadic nature. There are no tools measuring SDM in pediatrics from multiple perspectives. The objective of this study was to develop a tool to measure SDM from the perspectives of both clinicians and parents of young children. Design We used a stepwise iterative approach to tool development beginning with de novo item generation and followed by augmentation of the item pool by adapting items from existing instruments. After the study team removed redundant items, 3 parents and 3 SDM experts rated the remaining items for their ability to capture SDM in pediatrics; items with the lowest mean ratings were removed. To assess the preliminary tool’s face validity, usability, and item understandability, we pretested it, revising it iteratively, with sequential cohorts of English-speaking parents and clinicians from 2 US children’s hospitals. Results We generated an initial list of 28 items for the parent and clinician versions of the tool, which we reduced to 20 items after preliminary review. After review by parents and SDM experts, we cut 9 items and added 1 additional item for a total of 12 items. We pretested the preliminary tool with 31 clinicians and 30 parents across 3 sequential cohorts. The final tool contained 12 items and an optional free-text item. Limitations All participants were English speaking, limiting its generalizability. Conclusions We have developed a usable preliminary tool for measuring the dyadic process of SDM in pediatrics. Implications This tool represents an important first step toward addressing the measurement of SDM in pediatrics from multiple perspectives. Highlights In this study, we have developed the first shared decision making (SDM) tool specifically for use with parents of young children. Although further study is needed to determine the psychometric properties of this tool, it has the potential to address an important gap in our ability to measure SDM in pediatrics from multiple perspectives.