Department of Neurology; Department of Population and Quantitative Health Sciences; Meyers Primary Care Institute; Department of Medicine; School of Medicine
Cardiovascular Diseases | Critical Care | Health Services Administration | Health Services Research | Nervous System Diseases | Neurology | Palliative Care | Translational Medical Research | Trauma
Objectives: Families in the neurologic ICU urgently request goals-of-care decision support and shared decision-making tools. We recently developed a goals-of-care decision aid for surrogates of critically ill traumatic brain injury patients using a systematic development process adherent to the International Patient Decision Aid Standards. To widen its applicability, we adapted this decision aid to critically ill patients with intracerebral hemorrhage and large hemispheric acute ischemic stroke.
Design: Prospective observational study.
Setting: Two academic neurologic ICUs.
Subjects: Twenty family members of patients in the neurologic ICU were recruited from July 2018 to October 2018.
Measurements and Main Results: We reviewed the existing critically ill traumatic brain injury patients decision aid for content and changed: 1) the essential background information, 2) disease-specific terminology to "hemorrhagic stroke" and "ischemic stroke", and 3) disease-specific prognosis tailored to individual patients. We conducted acceptability and usability testing using validated scales. All three decision aids contain information from validated, disease-specific outcome prediction models, as recommended by international decision aid standards, including careful emphasis on their uncertainty. We replaced the individualizable icon arrays graphically depicting probabilities of a traumatic brain injury patient's prognosis with icon arrays visualizing intracerebral hemorrhage and hemispheric acute ischemic stroke prognostic probabilities using high-quality disease-specific data. We selected the Intracerebral Hemorrhage Score with validated 12-month outcomes, and for hemispheric acute ischemic stroke, the 12-month outcomes from landmark hemicraniectomy trials. Twenty family members participated in acceptability and usability testing (n = 11 for the intracerebral hemorrhage decision aid; n = 9 for the acute ischemic stroke decision aid). Median usage time was 22 minutes (interquartile range, 16-26 min). Usability was excellent (median System Usability Scale = 84/100 [interquartile range, 61-93; with > 68 indicating good usability]); 89% of participants graded the decision aid content as good or excellent, and greater than or equal to 90% rated it favorably for information amount, balance, and comprehensibility.
Conclusions: We successfully adapted goals-of-care decision aids for use in surrogates of critically ill patients with intracerebral hemorrhage and hemispheric acute ischemic stroke and found excellent usability and acceptability. A feasibility trial using these decision aids is currently ongoing to further validate their acceptability and test their feasibility for use in busy neurologic ICUs.
critical care, intracerebral hemorrhage, palliative medicine, prognosis, shared decision-making, stroke, UMCCTS funding
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Copyright © 2021 The Authors. Published by Wolters Kluwer Health, Inc. on behalf of the Society of Critical Care Medicine. This is an open-access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal.
DOI of Published Version
Goostrey KJ, Lee C, Jones K, Quinn T, Moskowitz J, Pach JJ, Knies AK, Shutter L, Goldberg R, Mazor KM, Hwang DY, Muehlschlegel S. Adapting a Traumatic Brain Injury Goals-of-Care Decision Aid for Critically Ill Patients to Intracerebral Hemorrhage and Hemispheric Acute Ischemic Stroke. Crit Care Explor. 2021 Mar 9;3(3):e0357. doi: 10.1097/CCE.0000000000000357. PMID: 33786434; PMCID: PMC7994105. Link to article on publisher's site
Critical care explorations
Goostrey K, Lee C, Jones K, Quinn T, Moskowitz J, Pach JJ, Knies AK, Shutter L, Goldberg RJ, Mazor KM, Hwang DY, Muehlschlegel S. (2021). Adapting a Traumatic Brain Injury Goals-of-Care Decision Aid for Critically Ill Patients to Intracerebral Hemorrhage and Hemispheric Acute Ischemic Stroke. UMass Center for Clinical and Translational Science Supported Publications. https://doi.org/10.1097/CCE.0000000000000357. Retrieved from https://escholarship.umassmed.edu/umccts_pubs/237
Creative Commons License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 4.0 License.
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