Abstract Details

Title Goals-Of-Care Decision Aid for Critically Ill TBI Patients: Development and Feasibility Testing

Topic Neuro Trauma, Critical Care, and Sports Neurology

Presentation(s) P14 - Poster Session 14 (8:00 AM-9:00 AM)

Poster/Presentation
Number 13-013

Objective To develop and demonstrate early feasibility of a goals-of-care decision aid (DA) for surrogates of critically ill traumatic brain injury (ciTBI) patients that meets accepted international DA guidelines.

Background Major professional societies and neuropalliative care professionals have recommended the practice of shared decision making to improve decisional conflict and reduce long-lasting psychological distress on surrogates making goals-of-care decisions in incapacitated critically ill patients; however, no shared decision making tools (DAs) exist for ciTBI patients or any patient in the neuroICU.

Design/Methods We developed the DA in four stages: 1) qualitative study of goals-of-care communication and decision needs of 36 stakeholders of ciTBI patients (surrogates and physicians), which informed: 2) development of paper-based DA with iterative revisions after feedback from 52 stakeholders; 3) acceptability and usability testing in 18 neuroICU family members recruited from two neuroICU waiting rooms using validated scales; 4) open-label, randomized-controlled feasibility trial in surrogates of ciTBI patients. We performed an interim analysis of 16 surrogates of 12 consecutive ciTBI patients to confirm early feasibility of the study protocol and report recruitment, participation, and retention rates to date.

Results The resultant goals-of-care DA achieved excellent usability (median System-Usability-Scale 87.5 [possible range 0-100]), and acceptability (97% graded the tool’s content as “good” or “excellent”). Early feasibility of the DA and the feasibility trial protocol was demonstrated by high rates of recruitment (73% consented), participation (100%), and retention (100% both after the goals-of-care clinician-family-meeting and at 3-months) and complete data for the measurements of all secondary decision-related and behavioral outcomes to date.

Conclusions Our systematic development process resulted in a novel goals-of-care DA for surrogates of ciTBI patients with excellent usability, acceptability and early feasibility in the neuroICU environment, and meets international DA standards. This methodology may be a development model for other DAs in neurology to promote shared decision-making.

Authors/Disclosures
Susanne Muehlschlegel, MD, MPH, F�鶹��ýӳ�� (Johns Hopkins School of Medicine) PRESENTER	Dr. Muehlschlegel has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Grace Pharmaceuticals Inc.. Dr. Muehlschlegel has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Grace Pharmaceuticals Inc.. The institution of Dr. Muehlschlegel has received research support from NIH. The institution of Dr. Muehlschlegel has received research support from NIH. The institution of an immediate family member of Dr. Muehlschlegel has received research support from NIH. The institution of Dr. Muehlschlegel has received research support from Johns Hopkins Stimulating and Advancing Anesthesiology & Critical Care Medicine Research (StAAR) Award. The institution of Dr. Muehlschlegel has received research support from Trustees of The Patrick and Catherine Weldon Donaghue Medical Research Foundation. The institution of Dr. Muehlschlegel has received research support from Harkin Family Fund (Johns Hopkins Dept. of Neurology). Dr. Muehlschlegel has received personal compensation in the range of $500-$4,999 for serving as a Speaker and Author with �鶹��ýӳ��. Dr. Muehlschlegel has a non-compensated relationship as a Member of Board of Directors with Neurocritical Care Society that is relevant to �鶹��ýӳ�� interests or activities. Dr. Muehlschlegel has a non-compensated relationship as a Officer of the Board of Directors with Neurocritical Care Society that is relevant to �鶹��ýӳ�� interests or activities.
David Y. Hwang, MD, F�鶹��ýӳ�� (University of North Carolina School of Medicine)	The institution of Dr. Hwang has received research support from NIH. The institution of Dr. Hwang has received research support from Neurocritical Care Foundation. Dr. Hwang has received personal compensation in the range of $10,000-$49,999 for serving as a Associate Medical Director with New England Donor Services.
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Lori A. Shutter, MD, FCCM, FNCS, F�鶹��ýӳ�� (UPMC Dept of Critical Care Medicine)	The institution of Dr. Shutter has received research support from NIH. Dr. Shutter has received publishing royalties from a publication relating to health care.
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