Senior Scholars Program

Title

Goals-of-care decision aid for critically ill patients with TBI: Development and feasibility testing

UMMS Affiliation

Department of Neurology; Department of Population and Quantitative Health Sciences; Meyers Primary Care Institute; Department of Medicine; School of Medicine; Senior Scholars Program

Faculty Mentor

Susanne Muehlschlegal

Publication Date

2020-06-17

Document Type

Article

Disciplines

Critical Care | Health Services Administration | Health Services Research | Medical Education | Nervous System Diseases | Neurology

Abstract

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

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

RESULTS: The resultant goals-of-care decision aid 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 decision aid 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 decision aid for surrogates of patients who are ciTBI with excellent usability, acceptability, and early feasibility in the neuroICU environment, and meets international decision aid standards. This methodology may be a development model for other decision aids in neurology to promote shared decision-making.

Keywords

UMCCTS funding

DOI of Published Version

10.1212/WNL.0000000000009770

Source

Muehlschlegel S, Hwang DY, Flahive J, Quinn T, Lee C, Moskowitz J, Goostrey K, Jones K, Pach JJ, Knies AK, Shutter L, Goldberg R, Mazor KM. Goals-of-care decision aid for critically ill patients with TBI: Development and feasibility testing. Neurology. 2020 Jul 14;95(2):e179-e193. doi: 10.1212/WNL.0000000000009770. Epub 2020 Jun 17. PMID: 32554766; PMCID: PMC7455326. Link to article on publisher's site

Journal/Book/Conference Title

Neurology

Comments

Thomas Quinn participated in this study as a medical student in the Senior Scholars research program at the University of Massachusetts Medical School.

Related Resources

Link to Article in PubMed

PubMed ID

32554766

Share

COinS