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Development and Pilot Testing of a Novel Graphic Values History Tool to Support Communication and Decision Making During Serious Illness

Background: We report the development and pilot-testing of a values history tool to support patients and their substitute decision makers (SDMs) in advance care planning.Methods: Tool development was an iterative, multi-phase process involving expert input, literature review, patient input, and beta-testing with 35 laypersons. In a single-center, before-after pilot study, we assessed the acceptability, clarity, and potential utility of the tool.  Results: Participants (n=6; 3 patients and 3 SDMs) rated the tool as clear (4.7/5), worthwhile (4.7/5), and said it did not cause distress (4.7/5).Tool completion and discussion resulted in better understanding of patient values (mean 4.5 on a 5-point scale) and helped build understanding between patient and SDM (4.3/5). ParticipantsConclusions: Based on development involving content experts, patients, and laypersons, we conclude that our tool has face and content validity. Our pilot study suggests it merits evaluation in larger studies to further evaluate its utility.