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Goals-of-care decision aid for critically ill patients with TBI: Development and feasibility testing
Susanne Muehlschlegel1, David Y Hwang2, Julie Flahive2
1From the Departments of Neurology (S.M., C.L., K.G., K.J.), Anesthesiology/Critical Care (S.M.), Surgery (S.M.), Population and Quantitative Health Sciences (J.F., R.G.), Meyers Primary Care Institute (K.M.M.), and Internal Medicine (K.M.M.), University of Massachusetts Medical School, Worcester; Center for Neuroepidemiology and Clinical Neurological Research (D.Y.H.) and Department of Neurology (D.Y.H., J.J.P., A.K.K.), Yale School of Medicine, New Haven, CT; Department of Medicine (T.Q.), Beth Israel Deaconess Hospital, Harvard Medical School, Boston, MA; Department of Psychiatry (J.M.), Brown Medical School, Providence, RI; and Departments of Critical Care Medicine and Neurology (L.S.), University of Pittsburgh School of Medicine, PA. susanne.muehlschlegel@umassmemorial.org.
A new goals-of-care decision aid for surrogates of critically ill traumatic brain injury (ciTBI) patients demonstrated excellent usability and acceptability. This tool shows early feasibility for use in neuroICU settings, supporting shared decision-making.
Area of Science:
- Neurology
- Critical Care Medicine
- Medical Decision Making
Background:
- Surrogates for critically ill traumatic brain injury (ciTBI) patients face complex decisions.
- Effective goals-of-care communication is crucial in neurointensive care units (neuroICUs).
- Existing decision aids may not adequately address the needs of this specific patient population.
Purpose of the Study:
- To develop and assess the early feasibility of a novel goals-of-care decision aid for surrogates of ciTBI patients.
- To ensure the decision aid meets international standards for usability and acceptability.
- To evaluate the feasibility of a clinical trial protocol for this decision aid.
Main Methods:
- A four-stage development process including qualitative studies, iterative revisions, and usability testing.
- Involvement of 36 stakeholders (surrogates and physicians) in initial development.
- Acceptability and usability testing with 18 family members in neuroICU waiting rooms.
- An interim analysis of a randomized controlled feasibility trial with 16 surrogates.
Main Results:
- The decision aid achieved excellent usability (median System Usability Scale 87.5) and high acceptability (97% rated content as "good" or "excellent").
- High recruitment (73%), participation (100%), and retention (100%) rates demonstrated early feasibility.
- Complete data for secondary outcomes were collected, indicating feasibility of the trial protocol.
Conclusions:
- A novel goals-of-care decision aid for ciTBI surrogates was successfully developed with excellent usability, acceptability, and feasibility.
- The decision aid meets international standards and is suitable for the neuroICU environment.
- The development methodology can serve as a model for creating other neurological decision aids to enhance shared decision-making.
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