Goals-of-care decision aid for critically ill patients with TBI

Abstract

ObjectiveTo 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.MethodsWe 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.ResultsThe 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.ConclusionsOur 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.

Adapting a Traumatic Brain Injury Goals-of-Care Decision Aid for Critically Ill Patients to Intracerebral Hemorrhage and Hemispheric Acute Ischemic Stroke

“…The rigorous, stepwise development process for our goals-of-care DA for surrogates of ciTBI patients, which meets International Patient DA Quality Standards criteria for high-quality DAs ( 9 ), has been previously published ( 8 ). In brief, this traumatic brain injury (TBI) goals-of-care DA is paper based, written at a sixth grade reading level, printed on 12 double-sided pages in Times New Roman font in letter size 16, and contains 10 photographs and several tables.…”

“…The ciTBI DA includes the following information: TBI terminology and essential background information; the nature of the goals-of-care decision; treatment options; potential post-ICU discharge dispositions or withdrawal of life-sustaining treatments with comfort-based care; an individualized icon array displaying each patient’s unique estimated prognosis derived from the validated TBI International Mission for Prognosis and Analysis of Clinical Trials model, accompanied by text carefully explaining and emphasizing prognostic uncertainty associated with prediction models; two patient examples; and an one-page worksheet designed to prepare surrogates for the family meeting (including a values clarification exercise, decision-readiness assessment, and a tear-away page to record questions) ( Supplemental Fig. 1 , Supplemental Digital Content 1, http://links.lww.com/CCX/A517 ) ( 8 ).…”

“…Of note, we also chose to provide accompanying text to clearly explain and emphasize prognostic uncertainty ( Supplemental Fig. 2 , Supplemental Digital Content 2, http://links.lww.com/CCX/A518 ), due to our awareness of the potential pitfalls of predicting an individual patient’s prognosis using prediction models derived from broad populations ( 8 ). In all of our DAs, explicit text informs surrogates that the prediction model does not take into account their loved one’s medical history, injuries to other organs, clinical course, and complications in the ICU and that they should ask the doctor how these factors may change their loved one’s prognosis.…”

“…To narrow this gap, we developed a paper-based pilot DA for surrogates of critically ill traumatic brain injury (ciTBI) patients making goals-of-care decisions using a rigorous and systematic approach ( 8 ). Importantly, this DA meets International Patient DA Quality Standards ( 8 , 9 ), which is an international guide on the content of high-quality DAs. During the DA’s development process, we received input from stakeholders, both surrogates and physicians, that goals-of-care DAs for other neurologic emergencies are urgently needed.…”

“…One other DA for strokes of all severities has recently been developed, which offers a web-based tool for both noncritically ill and critically ill patients making life-sustaining treatment decisions ( 13 ). Our DA is different from this tool in several ways: our tool purposefully includes 10 real photographs supplementing text, depicts the estimated prognosis in three levels (rather than 5) using icon arrays (rather than pie charts), all with the intention to lower the cognitive burden on stressed surrogates of critically ill patients ( 8 , 13 ).…”