Goals-of-care decision aid for critically ill patients with TBI: Development and feasibility testing.
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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.
SUBMITTER: Muehlschlegel S
PROVIDER: S-EPMC7455326 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:ObjectivesFamilies 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.DesignProspective observational study.SettingTwo academic neurologic ICUs.SubjectsTwenty family members of patients in the neurologic ICU were recruited from July 2018 to October 2018.InterventionsNone.Measurements and main resultsWe 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.ConclusionsWe 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.
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Project description:IntroductionPatients with acute uncomplicated appendicitis will be increasingly asked to choose between surgery and antibiotic management. We developed a novel decision aid for patients in the emergency department (ED) with acute appendicitis who are facing this choice. We describe the development of the decision aid and an initial feasibility study of its implementation in a busy tertiary care ED.Materials and methodsWe conducted a prepost survey analysis comparing patients before and after standardized implementation of the decision aid. Patients were surveyed about their experience making treatment decisions after discharge from the hospital. The primary outcome measure was the total score on the decisional conflict scale (; 0-100; lower scores better).ResultsThe study included 24 participants (12 in the predecision aid period; 12 in the post period). Only 33% of participants in each group knew antibiotics were a treatment option prior to arriving at the ED. Prior to implementing the use of decision aid, only 75% of patients reported being told antibiotics were a treatment option, while this increased to 100% after implementation of the decision aid. The mean total decisional conflict scalescores were similar in the pre and post periods (mean difference = 0.13, 95% CI: -13 - 13, P > 0.9).ConclusionsThis novel appendicitis decision aid was effectively integrated into clinical practice and helped toinform patients about multiple treatment options. These data support further large-scale testing of the decision aid as part of standardized pathways for the management of patients with acute appendicitis.
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Project description:BackgroundThe predominant oncologist-led model in many countries is unsustainable to meet the needs of a growing cohort of breast cancer survivors (BCS). Despite available alternative models, adoption rates have been poor. To help BCS navigate survivorship care, we aimed to systematically develop a decision aid (DA) to guide their choice of follow-up care model and evaluate its acceptability and usability among BCS and health care providers (HCPs).MethodsWe recruited BCS aged ≥ 21 years who have completed primary treatment and understand English. BCS receiving palliative care or with cognitive impairment were excluded. HCPs who routinely discussed post-treatment care with BCS were purposively sampled based on disciplines. Each participant reviewed the DA during a semi-structured interview using the 'think aloud' approach and completed an acceptability questionnaire. Descriptive statistics and directed content analysis were used.ResultsWe conducted three rounds of alpha testing with 15 BCS and 8 HCPs. All BCS found the final DA prototype easy to navigate with sufficient interactivity. The information imbalance favouring the shared care option perceived by 60% of BCS in early rounds was rectified. The length of DA was optimized to be 'just right'. Key revisions made included (1) presenting care options side-by-side to improve perceived information balance, (2) creating dedicated sections explaining HCPs' care roles to address gaps in health system contextual knowledge, and (3) employing a multicriteria decision analysis method for preference clarification exercise to reflect the user's openness towards shared care. Most BCS (73%) found the DA useful for decision-making, and 93% were willing to discuss the DA with their HCPs. Most HCPs (88%) agreed that the DA was a reliable tool and would be easily integrated into routine care.ConclusionsOur experience highlighted the need to provide contextual information on the health care system for decisions related to care delivery. Developers should address potential variability within the care model and clarify inherent biases, such as low confidence levels in primary care. Future work could expand on the developed DA's informational structure to apply to other care models and leverage artificial intelligence to optimize information delivery.
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Project description:ObjectiveSevere traumatic brain injury is a significant cause of morbidity and mortality in young adults. Assessing long-term neurological outcome after such injury is difficult and often characterised by uncertainty. The objective of this feasibility study was to establish the feasibility of conducting a large, multicentre prospective study to develop a prognostic model of long-term neurological outcome in critically ill patients with severe traumatic brain injury.DesignA prospective cohort study.Setting9 Canadian intensive care units enrolled patients suffering from acute severe traumatic brain injury. Clinical, biological, radiological and electrophysiological data were systematically collected during the first week in the intensive care unit. Mortality and functional outcome (Glasgow Outcome Scale extended) were assessed on hospital discharge, and then 3, 6 and 12?months following injury.OutcomesThe compliance to protocolised test procedures was the primary outcome. Secondary outcomes were enrolment rate and compliance to follow-up.ResultsWe successfully enrolled 50 patients over a 12-month period. Most patients were male (80%), with a median age of 45?years (IQR 29.0-60.0), a median Injury Severity Score of 38 (IQR 25-50) and a Glasgow Coma Scale of 6 (IQR 3-7). Mortality was 38% (19/50) and most deaths occurred following a decision to withdraw life-sustaining therapies (18/19). The main reasons for non-enrolment were the time window for inclusion being after regular working hours (35%, n=23) and oversight (24%, n=16). Compliance with protocolised test procedures ranged from 92% to 100% and enrolment rate was 43%. No patients were lost to follow-up at 6?months and 2 were at 12?months.ConclusionsIn this multicentre prospective feasibility study, we achieved feasibility objectives pertaining to compliance to test, enrolment and follow-up. We conclude that the TBI-Prognosis prospective multicentre study in severe traumatic brain injury patients in Canada is feasible.
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Project description:Objective: More people with cystic fibrosis (pwCF) are reaching adulthood and considering their reproductive futures. Unfortunately, many pwCF report gaps in their reproductive healthcare. We describe measures of stakeholder engagement in developing a reproductive goals decision aid for women with CF called MyVoice:CF. Methods: Stakeholders reviewed the content, design, and usability of the tool, which was informed by prior research related to CF family planning experiences and preferences as well as a conceptual understanding of reproductive decision making. We evaluated stakeholder engagement via process measures and outcomes of stakeholder involvement. We collected data via recorded stakeholder recommendations and surveys. Results: Fourteen stakeholders participated and the majority described their role on the project as "collaborator", "advisor", or "expert." Most felt their expectations for the project were met or exceeded, that they had contributed significantly, and that they received sufficient and frequent information about the process. All stakeholders provided recommen-dations and clarified aims for a CF-specific family planning tool, including its content and focus on facilitating shared decision making. Discussion: Utilizing meaningful stakeholder contributions, we developed MyVoice:CF, a novel web-based decision aid to help women with CF engage in shared decision-making regarding their reproductive goals. Practical Value: Our findings from working with stakeholders for MyVoice:CF indicate that disease-specific reproductive health resources can and should be designed with input from individuals in the relevant communities.
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Project description:BACKGROUND:Discussing goals of care and advance care planning is beneficial, yet how to best integrate goals of care communication into clinical care remains unclear. OBJECTIVE:To develop and determine the feasibility of a structured goals of care communication guide for nurses and social workers. DESIGN/SETTING/SUBJECTS:Developmental study with providers in an academic and Veterans Affairs (VA) health system (n?=?42) and subsequent pilot testing with patients with chronic obstructive pulmonary disease or heart failure (n?=?15) and informal caregivers (n?=?4) in a VA health system. During pilot testing, the communication guide was administered, followed by semistructured, open-ended questions about the content and process of communication. Changes to the guide were made iteratively, and subsequent piloting occurred until no additional changes emerged. MEASUREMENTS:Provider and patient feedback to the communication guide. RESULTS:Iterative input resulted in the goals of care communication guide. The guide included questions to elicit patient understanding of and attitudes toward the future of illness, clarify values and goals, identify end-of-life preferences, and agree on a follow-up plan. Revisions to guide content and phrasing continued during development and pilot testing. In pilot testing, patients validated the importance of the topic; none said the goals of care discussion should not be conducted. Patients and informal caregivers liked the final guide length (?30 minutes), felt it flowed well, and was clear. CONCLUSIONS:In this developmental and pilot study, a structured goals of care communication guide was iteratively designed, implemented by nurses and social workers, and was feasible based on administration time and acceptability by patients and providers.
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Project description:BackgroundAn increasing number of older adults drive automobiles. Given that the prevalence of dementia is rising, it is necessary to address the issue of driving retirement. The purpose of this study is to evaluate how a self-administered decision aid contributed to decision making about driving retirement by individuals living with dementia. The primary outcome measure in this study was decisional conflict. Knowledge, decision, satisfaction with decision, booklet use and booklet acceptability were the secondary outcome measures.MethodsA mixed methods approach was adopted. Drivers with dementia were recruited from an Aged Care clinic and a Primary Care center in NSW, Australia. Telephone surveys were conducted before and after participants read the decision aid.ResultsTwelve participants were recruited (mean age 75, SD 6.7). The primary outcome measure, decisional conflict, improved following use of the decision aid. Most participants felt that the decision aid: (i) was balanced; (ii) presented information well; and (iii) helped them decide about driving. In addition, mean knowledge scores improved after booklet use.ConclusionsThis decision aid shows promise as an acceptable, useful and low-cost tool for drivers with dementia. A self-administered decision aid can be used to assist individuals with dementia decide about driving retirement. A randomized controlled trial is underway to evaluate the effectiveness of the tool.
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