BACKGROUND: Prognostic uncertainty is frequently cited as a barrier to communication between physicians and patients and is particularly burdensome for surrogate decision-makers, who must make choices on behalf of their incapacitated family members. The Conceptual Taxonomy of Uncertainty is one model through which physician and surrogate communication can be analyzed to identify strategies for reducing uncertainty in surrogate decision-making. Our objective was to examine themes of uncertainty in physician communication of prognosis and surrogate goals-of-care decision-making for critically ill patients with traumatic brain injury (TBI). METHODS: We performed a secondary analysis of a previous qualitative study that involved semistructured interviews of 16 surrogates of critically ill patients with TBI from two level 1 trauma centers and 20 TBI expert physicians from seven trauma centers. Open-ended questions about prognostic uncertainty were asked. We identified major themes with an inductive approach. The Conceptual Taxonomy of Uncertainty was applied to further characterize these themes as data-centered, system-centered, and patient-centered issues of uncertainty. RESULTS: Nearly all surrogates (15 of 16) and physicians (19 of 20) recognized the emotional burden of uncertainty in the decision-making process for surrogates. More than three quarters of surrogates (13 of 16) described instances in which a lack of information regarding their loved one's disease or prognosis created uncertainty in their decision-making process, identifying both positive and negative instances of prognostic communication by physicians. We found that physicians used one of three strategies to communicate prognostic uncertainty to surrogates: leaving no room for uncertainty, honesty about uncertainty, and range of possibilities. These strategies did not meet the communication preferences of the majority of surrogates, with more than a third of decision-makers (6 of 15) being frustrated by too much ambiguity about prognosis as well as the failure to acknowledge the existence of uncertainty. CONCLUSIONS: We found that physician communication strategies rarely addressed surrogate needs regarding uncertainty adequately, suggesting an urgent need for future research into improved communication of prognostic uncertainty.

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. Interventions: None. 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.

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.

Introduction. Shared Decision-Making may facilitate information exchange, deliberation, and effective decision-making, but no decision aids currently exist for difficult decisions in neurocritical care patients. The International Patient Decision Aid Standards, a framework for the creation of high-quality decision aids (DA), recommends the presentation of numeric outcome and risk estimates. Efforts are underway to create a goals-of-care DA in critically-ill traumatic brain injury (ciTBI) patients. To inform its content, we examined physicians' perceptions, and use of the IMPACT-model, the most widely validated ciTBI outcome model, and explored physicians' preferences for communicating prognostic information towards families. Methods. We conducted a qualitative study using semi-structured interviews in 20 attending physicians (neurosurgery,neurocritical care,trauma,palliative care) at 7 U.S. academic medical centers. We used performed qualitative content analysis of transcribed interviews to identify major themes. Results. Only 12 physicians (60%) expressed awareness of the IMPACT-model; two stated that they "barely" knew the model. Seven physicians indicated using the model at least some of the time in clinical practice, although none used it exclusively to derive a patient's prognosis. Four major themes emerged: the IMPACT-model is intended for research but should not be applied to individual patients; mistrust in the IMPACT-model derivation data; the IMPACT-model is helpful in reducing prognostic variability among physicians; concern that statistical models may mislead families about a patient's prognosis. Discussion: Our study identified significant variability of the awareness, perception, and use of the IMPACT-model among physicians. While many physicians prefer to avoid conveying numeric prognostic estimates with families using the IMPACT-model, several physicians thought that they "ground" them and reduce prognostic variability among physicians. These findings may factor into the creation and implementation of future ciTBI-related DAs.

BACKGROUND: Surrogate decision-makers ("surrogates") and physicians of incapacitated patients have different views of prognosis and how it should be communicated, but this has not been investigated in neurocritically ill patients. We examined surrogates' communication preferences and physicians' practices during the outcome prognostication for critically ill traumatic brain injury (ciTBI) patients in two level-1 trauma centers and seven academic medical centers in the USA. METHODS: We used qualitative content analysis and descriptive statistics of transcribed interviews to identify themes in surrogates (n = 16) and physicians (n = 20). RESULTS: The majority of surrogates (82%) preferred numeric estimates describing the patient's prognosis, as they felt it would increase prognostic certainty, and limit the uncertainty perceived as frustrating. Conversely, 75% of the physicians reported intentionally omitting numeric estimates during prognostication meetings due to low confidence in family members' abilities to appropriately interpret probabilities, worry about creating false hope, and distrust in the accuracy and data quality of existing TBI outcome models. Physicians felt that these models are for research only and should not be applied to individual patients. Surrogates valued compassion during prognostication discussions, and acceptance of their goals-of-care decision by clinicians. Physicians and surrogates agreed on avoiding false hope. CONCLUSION: We identified fundamental differences in the communication preferences of prognostic information between ciTBI patient surrogates and physicians. These findings inform the content of a future decision aid for goals-of-care discussions in ciTBI patients. If validated, these findings may have important implications for improving communication practices in the neurointensive care unit independent of whether a formal decision aid is used.

BACKGROUND: Patients with rheumatoid arthritis (RA) demonstrate reduced aerobic capacity, excess cardiovascular risk, mobility limitations and are less physically active than their healthy peers. Physical activity may decrease RA disease activity through its anti-inflammatory effects and psychological and health benefits. To successfully manage RA symptoms and reduce cardiovascular risks associated with RA through increased physical activity (PA), accurate physical activity assessments are critical. Accelerometry is an objective physical activity measure, but not widely used. Validity of the Nurses' Health Study physical activity questionnaire II (NHSPAQ) has not been determined for estimation of physical activity in RA. This study examined NHSPAQ validity in adults with RA compared to accelerometry-based metabolic equivalents determined (METs) and results of performance tests. We hypothesized NHSPAQ scores would correlate moderately (0.4-0.5) with accelerometer physical activity estimates. METHODS: Thirty-five adults with RA (mean age [SD] 62 (Williams et. al, Health Qual Life Outcomes 10:28, 2012) years, 28 females (80%) recruited from a hospital-based clinic registry participated in a one-week accelerometry trial. Medical data was compiled. Participants completed the NHSPAQ, a self-paced 20-m walk test, and modified timed step test. Participants wore an accelerometer for 7 consecutive days, then completed a physical activity log and another NHSPAQ. Metabolic equivalents (METs) were derived from NHSPAQ and accelerometers using standardized formulas. NHSPAQ METs were correlated with accelerometer METs and data from performance measures. RESULTS: Average disease duration was 21 years (SD = 11), 63% patients took biologics. The average weekly METs reported were 29 (SD = 33) and accelerometer METs were 33 (SD = 22). NHSPAQ METs correlated moderately with accelerometer-derived METs (r = 0.48 95% CI (0.15-0.70). Self-reported PA correlated moderately with Step Test performance (r = 0.50 95% CI (0.18-0.72). CONCLUSION: Patients with RA exhibit low physical activity levels. General fitness measures were moderately correlated with physical activity levels. A moderate significant correlation existed between NHSPAQ and accelerometry METs. These preliminary data suggest the NHSPAQ may be useful to describe physical activity levels in this population.

Introduction: The International Patient Decision Aid Standards, a framework for the creation of high-quality decision aids, calls for the presentation of probabilities. To inform the content of a goals-of-care decision aid in critically-ill TBI (ciTBI) patients, we examined physician’s awareness, perceptions, and use of the IMPACT-model, the most widely validated ciTBI outcome model, and explored their preferences for communicating prognostic information towards families. Methods: We conducted a qualitative study using semi-structured interviews in 20 attending physicians (neurocritical care, neurosurgery, trauma, palliative care) at 7 U.S. academic medical centers. We used descriptive statistics and performed qualitative content analysis of transcribed interviews to identify major themes. Results: Only 12 physicians (60%) expressed awareness of the IMPACT-model; two stated that they “barely” knew the model. Seven physicians indicated using the model at least some of the time in clinical practice, although none used it exclusively to derive a patient’s prognosis. Four major themes emerged: the IMPACT-model is intended for research but should not be applied to individual patients; mistrust in the IMPACT-model derivation data; the IMPACT-model is helpful in reducing prognostic variability among physicians; concern that statistical models may mislead families about a patient’s prognosis. Conclusions: We identified substantial variability in the awareness of, use, and attitude toward the IMPACT model among physicians. Understanding knowledge, use, and barriers to using existing models, like IMPACT, is vital for creating and implementing a meaningful shared decision-making tool to improve goals-of-care discussions.

Objective: Surrogate decision-makers (“surrogates”) and physicians of incapacitated patients have different views of prognosis and how it should be communicated, but this has not been investigated in neurocritically-ill patients. We examined communication preferences in surrogates and physician practices during the outcome prognostication for critically-ill traumatic brain injury (ciTBI) patients in neuroICUs. Design: Qualitative study using in-person semi-structured interviews with surrogates of ciTBI patients and physicians with expertise in TBI. Setting: Two neuroICUs at two level-1 trauma centers (surrogates); seven academic U.S. medical centers (physicians). Subjects: Sixteen surrogates for 15 ciTBI patients and 20 attending physicians from neurocritical care, neurosurgery, trauma and palliative care. Interventions: Not applicable. Measurements and Main Results: We used qualitative content analysis and descriptive statistics of transcribed interviews to identify themes in surrogates and physicians. The majority of surrogates (82%) preferred numeric estimates describing the patient’s prognosis, as they felt it would limit prognostic uncertainty, which, in turn, surrogates perceived as frustrating. On the other hand, 75% of the physicians reported intentionally omitting numeric estimates during prognostication meetings due to low confidence in family members’ abilities to appropriately interpret probabilities, worry about creating false hope, and distrust in the accuracy and data quality of existing TBI outcome models. Physicians felt that TBI outcome models are for research only and should not be applied to individual patients. Surrogates valued compassion during prognostication discussions, and acceptance of their goals-of-care decision by clinicians. Physicians and surrogates agreed on avoiding false hope. Conclusions: We identified fundamental differences in preferences for the communication of prognostic information between surrogates of ciTBI patients and physicians during goals-of-care discussions. A decision aid could potentially bridge this chasm by providing surrogates consistent and patient-centered information, however, with qualitative rather than quantitative estimates of ciTBI prognosis and an open disclosure of uncertainty.