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Development and usability testing of a Web-based decision aid for families of patients receiving prolonged mechanical ventilation.

ABSTRACT: BACKGROUND:Web-based decision aids are increasingly important in medical research and clinical care. However, few have been studied in an intensive care unit setting. The objectives of this study were to develop a Web-based decision aid for family members of patients receiving prolonged mechanical ventilation and to evaluate its usability and acceptability. METHODS:Using an iterative process involving 48 critical illness survivors, family surrogate decision makers, and intensivists, we developed a Web-based decision aid addressing goals of care preferences for surrogate decision makers of patients with prolonged mechanical ventilation that could be either administered by study staff or completed independently by family members (Development Phase). After piloting the decision aid among 13 surrogate decision makers and seven intensivists, we assessed the decision aid's usability in the Evaluation Phase among a cohort of 30 surrogate decision makers using the Systems Usability Scale (SUS). Acceptability was assessed using measures of satisfaction and preference for electronic Collaborative Decision Support (eCODES) versus the original printed decision aid. RESULTS:The final decision aid, termed 'electronic Collaborative Decision Support', provides a framework for shared decision making, elicits relevant values and preferences, incorporates clinical data to personalize prognostic estimates generated from the ProVent prediction model, generates a printable document summarizing the user's interaction with the decision aid, and can digitally archive each user session. Usability was excellent (mean SUS, 80 ± 10) overall, but lower among those 56 years and older (73 ± 7) versus those who were younger (84 ± 9); p = 0.03. A total of 93% of users reported a preference for electronic versus printed versions. CONCLUSIONS:The Web-based decision aid for ICU surrogate decision makers can facilitate highly individualized information sharing with excellent usability and acceptability. Decision aids that employ an electronic format such as eCODES represent a strategy that could enhance patient-clinician collaboration and decision making quality in intensive care.

SUBMITTER: Cox CE

PROVIDER: S-EPMC4385299 | biostudies-literature | 2015

REPOSITORIES: biostudies-literature

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Development and usability testing of a Web-based decision aid for families of patients receiving prolonged mechanical ventilation.

Cox Christopher E CE Wysham Nicholas G NG Walton Brenda B Jones Derek D Cass Brian B Tobin Maria M Jonsson Mattias M Kahn Jeremy M JM White Douglas B DB Hough Catherine L CL Lewis Carmen L CL Carson Shannon S SS

Annals of intensive care 20150325

<h4>Background</h4>Web-based decision aids are increasingly important in medical research and clinical care. However, few have been studied in an intensive care unit setting. The objectives of this study were to develop a Web-based decision aid for family members of patients receiving prolonged mechanical ventilation and to evaluate its usability and acceptability.<h4>Methods</h4>Using an iterative process involving 48 critical illness survivors, family surrogate decision makers, and intensivist ...[more]

PMID: 25852965

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Project description:Background:Treatment decisions commonly have to be made in intensive care units (ICUs). These decisions are difficult for surrogate decision makers and often lead to decisional conflict, psychological distress, and treatments misaligned with patient preferences. Objective:To determine whether a decision aid about prolonged mechanical ventilation improved prognostic concordance between surrogate decision makers and clinicians compared with a usual care control. Design:Multicenter, parallel, randomized, clinical trial. (ClinicalTrials.gov: NCT01751061). Setting:13 medical and surgical ICUs at 5 hospitals. Participants:Adult patients receiving prolonged mechanical ventilation and their surrogates, ICU physicians, and ICU nurses. Intervention:A Web-based decision aid provided personalized prognostic estimates, explained treatment options, and interactively clarified patient values to inform a family meeting. The control group received information according to usual care practices followed by a family meeting. Measurements:The primary outcome was improved concordance on 1-year survival estimates, measured with the clinician-surrogate concordance scale (range, 0 to 100 percentage points; higher scores indicate more discordance). Secondary and additional outcomes assessed the experiences of surrogates (psychological distress, decisional conflict, and quality of communication) and patients (length of stay and 6-month mortality). Outcomes assessors were blinded to group allocation. Results:The study enrolled 277 patients, 416 surrogates, and 427 clinicians. Concordance improvement did not differ between intervention and control groups (mean difference in score change from baseline, -1.7 percentage points [95% CI, -8.3 to 4.8 percentage points]; P = 0.60). Surrogates' postintervention estimates of patients' 1-year prognoses did not differ between intervention and control groups (median, 86.0% [interquartile range {IQR}, 50.0%] vs. 92.5% [IQR, 47.0%]; P = 0.23) and were substantially more optimistic than results of a validated prediction model (median, 56.0% [IQR, 43.0%]) and physician estimates (median, 50.0% [IQR, 55.5%]). Eighty-two intervention surrogates (43%) favored a treatment option that was more aggressive than their report of patient preferences. Although intervention surrogates had greater reduction in decisional conflict than control surrogates (mean difference in change from baseline, 0.4 points [CI, 0.0 to 0.7 points]; P = 0.041), other surrogate and patient outcomes did not differ. Limitation:Contamination among clinicians could have biased results toward the null hypothesis. Conclusion:A decision aid about prolonged mechanical ventilation did not improve prognostic concordance between clinicians and surrogates, reduce psychological distress among surrogates, or alter clinical outcomes. Decision support in acute care settings may require greater individualized attention for both the cognitive and affective challenges of decision making. Primary Funding Source:National Institutes of Health.

Project description:BackgroundCystic fibrosis (CF) is a life-limiting genetic disease that causes chronic lung infections. We developed an internet-based decision aid (DA) to help patients with CF make better informed decisions regarding treatments and advance care planning. We built the DA around two major treatment decisions: whether to have a lung transplant and whether to agree to invasive mechanical ventilation (intubation).ObjectiveThis study aims to conduct usability testing of the InformedChoices CF DA among key stakeholder groups.MethodsWe performed a patient needs assessment using think-aloud usability testing with patients with CF, their surrogates, and CF clinicians. Think-aloud participants provided feedback while navigating the DA, and after viewing, they answered surveys. Transcripts from the think-aloud sessions and survey results were categorized into common, generalizable themes and optimizations for improving content, comprehension, and navigation. We assessed the ease of use of the DA (System Usability Scale) and also assessed the participants' perceptions regarding the overall tone, with an emphasis on emotional reactions to the DA content, level of detail, and usefulness of the information for making decisions about either intubation or lung transplantation, including how well they understood the information and were able to apply it to their own decision-making process. We also assessed the DA's ease of navigation, esthetics, and whether participants were able to complete a series of usability tasks (eg, locating specific information in the DA or using the interactive survival estimates calculator) to ensure that the website was easy to navigate during the clinic-based advance care planning discussions.ResultsA total of 12 participants from 3 sites were enrolled from March 9 to August 30, 2018, for the usability testing: 5 CF clinicians (mean age 48.2, SD 12.0 years), 5 adults with CF, and 2 family and surrogate caregivers of people with CF (mean age of CF adults and family and surrogate caregivers 38.8, SD 10.8 years). Among the 12 participants, the average System Usability Scale score for the DA was 88.33 (excellent). Think-aloud analysis identified 3 themes: functionality, visibility and navigation, and content and usefulness. Areas for improvement included reducing repetition, enhancing comprehension, and changing the flow. Several changes to improve the content and usefulness of the DA were recommended, including adding information about alternatives to childbearing, such as adoption and surrogacy. On the basis of survey responses, we found that the navigation of the site was easy for clinicians, patients, and surrogates who participated in usability testing.ConclusionsUsability testing revealed areas of potential improvement. Testing also yielded positive feedback, suggesting the DA's future success. Integrating changes before implementation should improve the DA's comprehension, navigation, and usefulness and lead to greater adoption.

Project description:BackgroundWeb-based tools developed to facilitate a shared decision-making (SDM) process may facilitate the implementation of lung cancer screening (LCS), an evidence-based intervention to improve cancer outcomes. Veterans have specific risk factors and shared experiences that affect the benefits and potential harms of LCS and thus may value a veteran-centric LCS decision tool (LCSDecTool).ObjectiveThis study aims to conduct usability testing of an LCSDecTool designed for veterans receiving care at a Veteran Affairs medical center.MethodsUsability testing of the LCSDecTool was conducted in a prototype version (phase 1) and a high-fidelity version (phase 2). A total of 18 veterans and 8 clinicians participated in phase 1, and 43 veterans participated in phase 2. Quantitative outcomes from the users included the System Usability Scale (SUS) and the End User Computing Satisfaction (EUCS) in phase 1 and the SUS, EUCS, and Patient Engagement scale in phase 2. Qualitative data were obtained from observations of user sessions and brief interviews. The results of phase 1 informed the modifications of the prototype for the high-fidelity version. Phase 2 usability testing took place in the context of a pilot hybrid type 1 effectiveness-implementation trial.ResultsIn the phase 1 prototype usability testing, the mean SUS score (potential range: 0-100) was 81.90 (SD 9.80), corresponding to an excellent level of usability. The mean EUCS score (potential range: 1-5) was 4.30 (SD 0.71). In the phase 2 high-fidelity usability testing, the mean SUS score was 65.76 (SD 15.23), corresponding to a good level of usability. The mean EUCS score was 3.91 (SD 0.95); and the mean Patient Engagement scale score (potential range 1 [low] to 5 [high]) was 4.62 (SD 0.67). The median time to completion in minutes was 13 (IQR 10-16). A thematic analysis of user statements documented during phase 2 high-fidelity usability testing identified the following themes: a low baseline level of awareness and knowledge about LCS increased after use of the LCSDecTool; users sought more detailed descriptions about the LCS process; the LCSDecTool was generally easy to use, but specific navigation challenges remained; some users noted difficulty understanding medical terms used in the LCSDecTool; and use of the tool evoked veterans' struggles with prior attempts at smoking cessation.ConclusionsOur findings support the development and use of this eHealth technology in the primary care clinical setting as a way to engage veterans, inform them about a new cancer control screening test, and prepare them to participate in an SDM discussion with their provider.

Project description:BackgroundDeciding whether and how to disclose one's autism at work is complex, especially for autistic youth and young adults who are newly entering the labor market and still learning important decision-making and self-determination skills. Autistic youth and young adults may benefit from tools to support disclosure processes at work; however, to our knowledge, no evidence-based, theoretically grounded tool exists specifically for this population. There is also limited guidance on how to pursue the development of such a tool in collaboration with knowledge users.ObjectiveThis study aimed to co-design a prototype of a disclosure decision aid tool with and for Canadian autistic youth and young adults, explore the perceived usability of the prototype (usefulness, satisfaction, and ease of use) and make necessary revisions, and outline the process used to achieve the aforementioned objectives.MethodsTaking a patient-oriented research approach, we engaged 4 autistic youths and young adults as collaborators on this project. Prototype development was guided by co-design principles and strategies, and tool content was informed by a previous needs assessment led by our team, the autistic collaborators' lived experiences, considering intersectionality, research on knowledge translation (KT) tool development, and recommendations from the International Patient Decision Aid Standards. We co-designed a web-based PDF prototype. To assess perceived usability and experiences with the prototype, we conducted 4 participatory design and focus group Zoom (Zoom Video Communications) sessions with 19 Canadian autistic youths and young adults aged 16 to 29 (mean 22.8, SD 4.1) years. We analyzed the data using a combined conventional (inductive) and modified framework method (deductive) analysis to map the data onto usability indicators (usefulness, satisfaction, and ease of use). Grounded in participants' feedback, considering factors of feasibility and availability of resources, and ensuring tool fidelity, we revised the prototype.ResultsWe developed 4 categories pertaining to the perceived usability of and participant experiences with the prototype: past disclosure experiences, prototype information and activities, prototype design and structure, and overall usability. Participant feedback was favorable and indicative of the tool's potential impact and usability. The usability indicator requiring the most attention was ease of use, which was prioritized when revising the prototype. Our findings highlight the importance of engaging knowledge users throughout the entire prototype co-design and testing processes; incorporating co-design strategies and principles; and having content informed by relevant theories, evidence, and knowledge users' experiences.ConclusionsWe outline an innovative co-design process that other researchers, clinicians, and KT practitioners may consider when developing KT tools. We also developed a novel, evidence-based, and theoretically informed web-based disclosure decision aid tool that may help autistic youth and young adults navigate disclosure processes and improve their transitional outcomes as they enter the workforce.

Project description:BackgroundMultiple sclerosis (MS) patients often struggle with treatment decisions, in part due to the increasing number of approved disease modifying therapies, each with different characteristics, and also since physicians can struggle to identify which of these characteristics matter most to each individual patient. Decision uncertainty can contribute to late treatment initiation and treatment non-adherence-causes of 'undertreatment' in MS. An interactive online patient decision aid that informs patients of their options, considers their individual preferences and goals, and facilitates conversations with their physicians, could improve how patients with relapsing forms of MS make evidence-based treatment decisions.ObjectiveTo develop and evaluate a prototype patient decision aid (PtDA) for first-line disease modifying therapies for relapsing-remitting multiple sclerosis.MethodsInformed by previous studies and International Patient Decision Aid Standards guidelines, a prototype PtDA was developed for patients with relapsing multiple sclerosis considering first line treatment. Patients with relapsing multiple sclerosis were recruited from the University of British Columbia's Multiple Sclerosis Clinic to participate in either an online survey or a focus group. Online survey participants completed the PtDA, followed by measures of acceptability, usability, and preparedness for decision-making, and provided general feedback. Focus group participants assessed usability of the revised PtDA. The analysis of qualitative and quantitative data led to improvements of the PtDA prototype.ResultsThe prototype PtDA received high ratings for acceptability and usability, and after its use, participants reported high-levels of preparedness for decision-making. Analysis of all qualitative data identified three key themes: the need for credible information; the usefulness of the PtDA; and the importance of normalizing and sharing experiences. Nine content areas were identified for revision. Overall, participants found the PtDA to be a valuable tool for facilitating treatment decisions.ConclusionsThis mixed methods study has led to the development of a PtDA that can support patients with RRMS as they make treatment decisions. Future studies will assess the feasibility of implementation and the impact of the PtDA on both the timely treatment initiation and longer-term adherence.

Project description:BackgroundIn intensive care unit (ICU) patients, diaphragmatic dysfunction (DD) can occur on admission or during the subsequent stay. The respective incidence of these two phenomena has not been previously studied in humans. The study was designed to describe temporal trends in diaphragm function in mechanically ventilated (MV) patients.MethodsAncillary study of a prospective, 6-month, observational cohort study conducted in two ICUs. MV patients were studied within 24 h following intubation (day-1) and every 48-72 h thereafter. Diaphragm function was assessed by twitch tracheal pressure (Ptr,stim) in response to bilateral anterior magnetic phrenic nerve stimulation. Diaphragm dysfunction was defined as Ptr,stim < 11 cmH2O. Patients who received MV for at least 5 days were retained, and the first and the last measures were analysed.ResultsForty-three patients were included. Overall, 79 % of patients developed DD at some point during their ICU stay: 23 (53 %) patients presented DD on initiation of mechanical ventilation, 14 (33 %) of whom had persistent DD, while diaphragm function improved in 9 (21 %). Among the remaining 20 (47 %) patients who did not present DD on initiation of MV, 11 (26 %) developed DD during the ICU stay, while 9 (21 %) did not. Mortality was higher in patients with DD either on initiation of mechanical ventilation or during the subsequent ICU stay than in those who never developed DD (35 vs. 0 %, p = 0.04). Duration of MV was higher in patients with DD on initiation of MV that subsequently persisted than in patients who never exhibited diaphragm dysfunction (18 vs. 5 days, p = 0.04). Factors associated with a change in Ptr,stim were: age [linear coefficient regression (Coeff.) -0.097, standard error (SD) 0.047, p = 0.046], PaO2/FiO2 ratio (Coeff. 0.014, SD 0.006, p = 0.0211) and the proportion of the time under MV with sedation (per 10 %, Coeff. -5.359, SD 2.451, p = 0.035).ConclusionsDD is observed in a large majority of MV patients ≥5 days at some point of their ICU stay. Various patterns of DD are observed, including DD on initiation of mechanical ventilation and ICU-acquired DD. Trial registration clinicaltrials.gov Identifier # NCT00786526.

Project description:Many intensive care unit patients who undergo endotracheal extubation experience extubation failure and require reintubation. Because of the high mortality rate associated with reintubation, postextubation respiratory management is crucial, especially for high-risk populations. We conducted the present study to compare the effectiveness of oxygen therapy administered using high-flow nasal cannulae (HFNC) and noninvasive positive pressure ventilation (NIPPV) in preventing reintubation among patients receiving prolonged mechanical ventilation (PMV). This single-center, prospective, unblinded randomized controlled trial was at the respiratory care center (RCC). Participants were randomized to an HFNC group or an NIPPV group (20 patients in each) and received noninvasive respiratory support (NRS) administered using their assigned method. The primary outcome was reintubation within7 days after extubation. None of the patients in the NIPPV group required reintubation, whereas 5 (25%) of the patients in the HFNC group required reintubation (P = 0.047). The 90-day mortality rates of the NIPPV and HFNC groups (four patients [20%] vs. two patients [10%], respectively) did not differ significantly. No significant differences in length of RCC stay, length of hospital stay, time to liberation from NRS, and ventilator-free days at 28-day were identified. The time to event outcome analysis also revealed that the risk of reintubation in the HFNC group was higher than that in the NIPPV group (P = 0.018). Although HFNC is becoming increasingly common as a form of postextubation NRS, HFNC may not be as effective as NIPPV in preventing reintubation among patients who have been receiving PMV for at least 2 weeks. Additional studies evaluating HFNC as an alternative to NIPPV for patients receiving PMV are warranted.ClinicalTrial.gov ID: NCT04564859; IRB number: 20160901R.Trial registration: ClinicalTrial.gov ( https://clinicaltrials.gov/ct2/show/NCT04564859 ).

Dataset Information

Development and usability testing of a Web-based decision aid for families of patients receiving prolonged mechanical ventilation.

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Development and usability testing of a Web-based decision aid for families of patients receiving prolonged mechanical ventilation.

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