Development and usability testing of Understanding Stroke, a tailored life-sustaining treatment decision support tool for stroke surrogate decision makers.

BMC Palliative Care
Emily P ChenDarin B Zahuranec

Abstract

Surrogate decision makers of stroke patients are often unprepared to make critical decisions on life-sustaining treatments. We describe the development process and key features for the Understanding Stroke web-based decision support tool. We used multiple strategies to develop a patient-centered, tailored decision aid. We began by forming a Patient and Family Advisory Council to provide continuous input to our multidisciplinary team on the development of the tool. Additionally, focus groups consisting of nurses, therapists, social workers, physicians, stroke survivors, and family members reviewed key elements of the tool, including prognostic information, graphical displays, and values clarification exercise. To design the values clarification exercise, we asked focus groups to provide feedback on a list of important activities of daily living. An ordinal prognostic model was developed for ischemic stroke and intracerebral hemorrhage using data taken from the Virtual International Stroke Trials Archive Plus, and incorporated into the tool. Focus group participants recommended making numeric prognostic information optional due to possible emotional distress. Pie charts were generally favored by participants for graphical present...Continue Reading

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Clinical Trials Mentioned

NCT03427645

Software Mentioned

Understanding
VISTA
Understanding Stroke
Plus
Virtual International Stroke Trials Archive Plus ( VISTA - Plus )

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