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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.

This research followed a longitudinal pre- and posttest mixed methods design. An investigator-developed questionnaire collected qualitative (distress screening goals, institutional barriers and facilitators, facilitators associated with participation in the SPDP) and quantitative (level of goal achievement) data at 6, 12, and 24 months of participation in the SPDP. Conventional content analysis was applied to qualitative data. Mixed methods data analysis in Dedoose evaluated (1) types and number of distress screening goals, barriers, and facilitators, and (2) goal achievement at 6, 12, and 24 months of participation.ResultNinety-five percent of distress screening implementation goals were completed after 2 years of participation. Most common institutional barriers to distress screening implementation were "lack of staff," "competing demands," and "staff turn-over." Most common institutional facilitators were "buy-in," "institutional support," and "recognition of participants' expertise." The number of reported facilitators associated with SPDP participation was higher than the number associated with any institutional factor, and increased over time of participation.Significance of resultsParticipating in training programs to implement distress screening may facilitate successful achievement of the Commission on Cancer's distress screening standard, and benefits seem to increase with time of participation. Training programs are needed to promote facilitators and overcome barriers to distress screening.

Dedicated afternoon rounds for families twice a week may not necessarily improve an ICU's overall family satisfaction. Increased dissatisfaction among families who do not or cannot participate is possible.

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