Abstract
BackgroundSurrogate 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.MethodsWe 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.ResultsFocus group participants recommended making numeric prognostic information optional due to possible emotional distress. Pie charts were generally favored by participants for graphical presentation of prognostic information, though a horizontal stacked bar chart was also added due to its prevalence in stroke literature. Plain language descriptions of the modified Rankin Scale were created to accompany the prognostic information. A values clarification exercise was developed consisting of a list of 13 situations that may make an individual consider comfort measures only. The final version of the web based tool (which can be viewed on tablets) included the following sections: general introduction to stroke, outcomes (prognostic information and recovery), in-hospital and life-sustaining treatments, decision making and values clarification, post-hospital care, tips for talking to the health care team, and a summary report. Preliminary usability testing received generally favorable feedback.ConclusionWe developed Understanding Stroke, a tailored decision support tool for surrogate decision makers of stroke patients. The tool was well received and will be formally pilot tested in a group of stroke surrogate decision makers.Trial registrationClinicalTrials.gov (NCT03427645).
Highlights
Surrogate decision makers of stroke patients are often unprepared to make critical decisions on lifesustaining treatments
The tool was well received and will be formally pilot tested in a group of stroke surrogate decision makers
To clarify to the user that continued improvement is possible beyond 3 months, the following sentence was added – “While people can continue to improve for a year or more after a stroke, doctors have found that most recovery happens in the first 3 to 6 months.”
Summary
Surrogate decision makers of stroke patients are often unprepared to make critical decisions on lifesustaining treatments. Patients hospitalized with serious acute illness face critical decisions about their medical care and use of life sustaining treatments. In neurologic illness such as stroke, patient decisional capacity is commonly impaired and decisions regarding interventions such as resuscitation, ventilation, or artificial nutrition are made by a surrogate decision maker who is typically a family member or trusted loved one. Only a limited number of tools have been developed to support decision-making on life sustaining treatment during an acute hospitalization [6, 8,9,10,11,12,13], and none have been developed for stroke decision making. We describe the development process, key features, and initial usability testing for this tool
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