[Can we increase the availability of decision aids in French-speaking Switzerland?] / Comment augmenter l'accès aux outils d'aide à la décision en Suisse romande ?

Models of shared decision making recommend the use of patient decision aids. Hundreds of such aids exist worldwide but scaling up of their use in French-speaking Switzerland requires their translation to French and their adaptation to the clinical context. We review seven sources of tools that we assume relevant for French-speaking Switzerland. A short survey on a selection of three decision aids of general practitioners in the canton of Vaud confirmed their general interest in using such tools. They preferred a limited amount and a simple presentation of information in the decision aids to facilitate integration in clinical practice. Given the complexity of the required translations and adaptations, the medical community should develop a collaborative approach to lift this important task.

Les modèles de décision partagée recommandent, autant que possible, l'utilisation d'outils d'aide à la décision. La mise à l'échelle de la décision partagée en Suisse romande nécessite l'accès à un grand nombre d'outils de qualité disponibles en français et adaptés à notre pratique. Des centaines d'outils existent dans le monde entier. Nous passons en revue 7 types d'outils que nous supposons pertinents pour leur utilisation en Suisse romande. Nous présentons également l'avis d'un échantillon de convenance de 10 médecins généralistes vaudois sur une sélection de 3 outils. Les médecins étaient intéressés par l'utilisation de ces outils. Ils jugeaient qu'une quantité limitée et une présentation simplifiée des informations s'intégreraient mieux à leur pratique. La question de leur traduction et/ou adaptation éventuelle demeure complexe.

Selecting implementation models, theories, and frameworks in which to integrate intersectional approaches.

BACKGROUND: Models, theories, and frameworks (MTFs) provide the foundation for a cumulative science of implementation, reflecting a shared, evolving understanding of various facets of implementation. One under-represented aspect in implementation MTFs is how intersecting social factors and systems of power and oppression can shape implementation. There is value in enhancing how MTFs in implementation research and practice account for these intersecting factors. Given the large number of MTFs, we sought to identify exemplar MTFs that represent key implementation phases within which to embed an intersectional perspective. METHODS: We used a five-step process to prioritize MTFs for enhancement with an intersectional lens. We mapped 160 MTFs to three previously prioritized phases of the Knowledge-to-Action (KTA) framework. Next, 17 implementation researchers/practitioners, MTF experts, and intersectionality experts agreed on criteria for prioritizing MTFs within each KTA phase. The experts used a modified Delphi process to agree on an exemplar MTF for each of the three prioritized KTA framework phases. Finally, we reached consensus on the final MTFs and contacted the original MTF developers to confirm MTF versions and explore additional insights. RESULTS: We agreed on three criteria when prioritizing MTFs: acceptability (mean = 3.20, SD = 0.75), applicability (mean = 3.82, SD = 0.72), and usability (median = 4.00, mean = 3.89, SD = 0.31) of the MTF. The top-rated MTFs were the Iowa Model of Evidence-Based Practice to Promote Quality Care for the 'Identify the problem' phase (mean = 4.57, SD = 2.31), the Consolidated Framework for Implementation Research for the 'Assess barriers/facilitators to knowledge use' phase (mean = 5.79, SD = 1.12), and the Behaviour Change Wheel for the 'Select, tailor, implement interventions' phase (mean = 6.36, SD = 1.08). CONCLUSIONS: Our interdisciplinary team engaged in a rigorous process to reach consensus on MTFs reflecting specific phases of the implementation process and prioritized each to serve as an exemplar in which to embed intersectional approaches. The resulting MTFs correspond with specific phases of the KTA framework, which itself may be useful for those seeking particular MTFs for particular KTA phases. This approach also provides a template for how other implementation MTFs could be similarly considered in the future. TRIAL REGISTRATION: Open Science Framework Registration: osf.io/qgh64.

Prioritization of indicators of the quality of care provided to older adults with frailty by key stakeholders from five canadian provinces.

BACKGROUND: To meet the needs of older adults with frailty better, it is essential to understand which aspects of care are important from their perspective. We therefore sought to assess the importance of a set of quality indicators (QI) for monitoring outcomes in this population. METHODS: In this mixed-method study, key stakeholders completed a survey on the importance of 36 QIs, and then explained their ratings in a semi-structured interview. Stakeholders included older adults with frailty and their caregivers, healthcare providers (HCPs), and healthcare administrators or policy/decision makers (DMs). We conducted descriptive statistical analyses of quantitative variables, and deductive thematic qualitative analyses of interview transcripts. RESULTS: The 42 participants (8 older adults, 18 HCPs, and 16 DMs) rated six QIs as more important: increasing the patients' quality of life; increasing healthcare staff skills; decreasing patients' symptoms; decreasing family caregiver burden; increasing patients' satisfaction with care; and increasing family doctor continuity of care. CONCLUSIONS: Key stakeholders prioritized QIs that focus on outcomes targeted to patients and caregivers, whereas the current healthcare systems generally focus on processes of care. Quality improvement initiatives should therefore take better account of aspects of care that are important for older adults with frailty, such as having a chance to express their individual goals of care, receiving quality communications from HCPs, or monitoring symptoms that they might not spontaneously describe. Our results point to the need for patient-centred care that is oriented toward quality of life for older adults with frailty.

A national intervention to support frail older adults in primary care: a protocol for an adapted implementation framework.

BACKGROUND: Older Canadians are high users of health care services, however the health care system is not well-designed to meet the complex needs of many older adults. Older persons often look to their primary care practitioners to assess their needs and coordinate their care. The intervention seeks to improve primary care for older persons living with frailty and will be implemented in six primary care clinics in three Canadian provinces. Presently, more than 1.6 million older Canadians are living with frailty, and this is projected to increase to 2.5 million within a decade (Canadian Frailty Network, Frailty Matters, 2020). The model will include frailty screening, an online portal to expedite referrals and improve coordination with community services, and several tools and techniques to support patient and family engagement and shared decision-making. Our project is guided by the Consolidated Framework for Implementation Research (CFIR) (Damschroder LJ, et al. Implement Scil, 4, 50, 2009). As others have done, we adapted the CFIR for our work. Our adapted framework combines elements of the socio-ecological model, key concepts from the CFIR, and elements from other implementation science frameworks. Nested within a broader mixed-method implementation study, the focus of this paper is to outline our guiding conceptual framework and qualitative methods protocol. METHODS: We will use the adapted CFIR framework to inform the data we collect and our analytic approach. Our work is divided into three phases: (1) baseline assessment of 'usual care'; (2) tailoring and implementing a new primary care model; and (3) evaluation. In each of these phases we will engage in qualitative data collection, including clinical observations, focus groups, in-depth interviews and extensive field notes. At each site we will collect data with health care providers, key informants (e.g., executive directors), and rostered patients ≥ 70 years. We will engage in team-based analysis across multiple sites, three provinces and two languages through regular telephone conferences, a comprehensive analysis codebook, leadership from our Qualitative Working Group and a collective appreciation that "science is a team sport" (Clinical Orthopaedics and Related Research 471, 701-702, 2013). DISCUSSION: Outcomes of this research may be used by other research teams who chose to adapt the CFIR framework to reflect the unique contexts of their work, and clinicians seeking to implement our model, or other models of care for frail older patients in primary care. TRIAL REGISTRATION: U.S. National Library of Medicine, NCT03442426 . Registered 22 February 2018- Retrospectively registered.

Processes for evidence summarization for patient decision aids: A Delphi consensus study.

BACKGROUND: Patient decision aids (PDAs) should provide evidence-based information so patients can make informed decisions. Yet, PDA developers do not have an agreed-upon process to select, synthesize and present evidence in PDAs. OBJECTIVE: To reach the consensus on an evidence summarization process for PDAs. DESIGN: A two-round modified Delphi survey. SETTING AND PARTICIPANTS: A group of international experts in PDA development invited developers, scientific networks, patient groups and listservs to complete Delphi surveys. DATA COLLECTION: We emailed participants the study description and a link to the online survey. Participants were asked to rate each potential criterion (omit, possible, desirable, essential) and provide qualitative feedback. ANALYSIS: Criteria in each round were retained if rated by >80% of participants as desirable or essential. If two or more participants suggested rewording, reordering or merging, the steering group considered the suggestion. RESULTS: Following two Delphi survey rounds, the evidence summarization process included defining the decision, reporting the processes and policies of the evidence summarization process, assembling the editorial team and managing (collect, manage, report) their conflicts of interest, conducting a systematic search, selecting and appraising the evidence, presenting the harms and benefits in plain language, and describing the method of seeking external review and the plan for updating the evidence (search, selection and appraisal of new evidence). CONCLUSION: A multidisciplinary stakeholder group reached consensus on an evidence summarization process to guide the creation of high-quality PDAs. PATIENT CONTRIBUTION: A patient partner was part of the steering group and involved in the development of the Delphi survey.

Translation and psychometric evaluation of the German version of the IcanSDM measure - a cross-sectional study among healthcare professionals.

BACKGROUND: Shared decision-making (SDM) between patients and healthcare professionals (HCPs) is a key component of patient-centred care. To implement SDM in clinical practice and to evaluate its effects, it is helpful to know about HCPs' perception of SDM barriers. The measure IcanSDM was developed in Canada and assesses the perception of SDM barriers. To our knowledge, no equivalent measure exists in German. Therefore, the aim of this study was to translate and adapt the IcanSDM measure to be used by a German speaking population and evaluate its psychometric properties. METHODS: This is a cross-sectional psychometric study based on a secondary analysis of baseline data from a SDM implementation study. The original 8-item IcanSDM was translated into German using a team translation protocol. We assessed comprehensibility via cognitive interviews with n = 11 HCPs. Based on results of cognitive interviews, the translated IcanSDM version was revised. Two hundred forty-two HCPs filled out the measure. Psychometric analysis included acceptance (completion rate), item characteristics (response distribution, skewness, item difficulties, corrected item-total correlations, inter-item correlations), factorial structure (confirmatory factor analysis (CFA), model fit), and internal consistency (Cronbach's α). RESULTS: We translated and adapted the German IcanSDM successfully except for item 8, which had to be revised after the cognitive interviews. Completion rate was 98%. Skewness of the items ranged between -.797 and 1.25, item difficulties ranged between 21.63 and 70.85, corrected item-total-correlations ranged between .200 and .475, inter-item correlations ranged between .005 and .412. Different models based on CFA results did not provide a valid factorial structure. Cronbach's α ranged between .563 and .651 for different factor models. CONCLUSION: We provide the first German measure for assessing perception of SDM barriers by HCPs. The German IcanSDM is a brief measure with good acceptance. However, we found unsatisfying psychometric properties, which were comparable to results of the original scale. In a next step, the IcanSDM should be further developed and modified and predictive validity should be evaluated.

An 11-Item Measure of User- and Human-Centered Design for Personal Health Tools (UCD-11): Development and Validation.

BACKGROUND: Researchers developing personal health tools employ a range of approaches to involve prospective users in design and development. OBJECTIVE: The aim of this paper was to develop a validated measure of the human- or user-centeredness of design and development processes for personal health tools. METHODS: We conducted a psychometric analysis of data from a previous systematic review of the design and development processes of 348 personal health tools. Using a conceptual framework of user-centered design, our team of patients, caregivers, health professionals, tool developers, and researchers analyzed how specific practices in tool design and development might be combined and used as a measure. We prioritized variables according to their importance within the conceptual framework and validated the resultant measure using principal component analysis with Varimax rotation, classical item analysis, and confirmatory factor analysis. RESULTS: We retained 11 items in a 3-factor structure explaining 68% of the variance in the data. The Cronbach alpha was .72. Confirmatory factor analysis supported our hypothesis of a latent construct of user-centeredness. Items were whether or not: (1) patient, family, caregiver, or surrogate users were involved in the steps that help tool developers understand users or (2) develop a prototype, (3) asked their opinions, (4) observed using the tool or (5) involved in steps intended to evaluate the tool, (6) the process had 3 or more iterative cycles, (7) changes between cycles were explicitly reported, (8) health professionals were asked their opinion and (9) consulted before the first prototype was developed or (10) between initial and final prototypes, and (11) a panel of other experts was involved. CONCLUSIONS: The User-Centered Design 11-item measure (UCD-11) may be used to quantitatively document the user/human-centeredness of design and development processes of patient-centered tools. By building an evidence base about such processes, we can help ensure that tools are adapted to people who will use them, rather than requiring people to adapt to tools.

User-centered and theory-based design of a professional training program on shared decision-making with older adults living with neurocognitive disorders: a mixed-methods study.

BACKGROUND: We know little about the best approaches to design training for healthcare professionals. We thus studied how user-centered and theory-based design contribute to the development of a distance learning program for professionals, to increase their shared decision-making (SDM) with older adults living with neurocognitive disorders and their caregivers. METHODS: In this mixed-methods study, healthcare professionals who worked in family medicine clinics and homecare services evaluated a training program in a user-centered approach with several iterative phases of quantitative and qualitative evaluation, each followed by modifications. The program comprised an e-learning activity and five evidence summaries. A subsample assessed the e-learning activity during semi-structured think-aloud sessions. A second subsample assessed the evidence summaries they received by email. All participants completed a theory-based questionnaire to assess their intention to adopt SDM. Descriptive statistical analyses and qualitative thematic analyses were integrated at each round to prioritize training improvements with regard to the determinants most likely to influence participants' intention. RESULTS: Of 106 participants, 98 completed their evaluations of either the e-learning activity or evidence summary (93%). The professions most represented were physicians (60%) and nurses (15%). Professionals valued the e-learning component to gain knowledge on the theory and practice of SDM, and the evidence summaries to apply the knowledge gained through the e-learning activity to diverse clinical contexts. The iterative design process allowed addressing most weaknesses reported. Participants' intentions to adopt SDM and to use the summaries were high at baseline and remained positive as the rounds progressed. Attitude and social influence significantly influenced participants' intention to use the evidence summaries (P < 0.0001). Despite strong intention and the tailoring of tools to users, certain factors external to the training program can still influence the effective use of these tools and the adoption of SDM in practice. CONCLUSIONS: A theory-based and user-centered design approach for continuing professional development interventions on SDM with older adults living with neurocognitive disorders and their caregivers appeared useful to identify the most important determinants of learners' intentions to use SDM in their practice, and validate our initial interpretations of learners' assessments during the subsequent evaluation round.

Printed educational materials: effects on professional practice and healthcare outcomes.

BACKGROUND: Printed educational materials are widely used dissemination strategies to improve the quality of healthcare professionals' practice and patient health outcomes. Traditionally they are presented in paper formats such as monographs, publication in peer-reviewed journals and clinical guidelines. This is the fourth update of the review. OBJECTIVES: To assess the effect of printed educational materials (PEMs) on the practice of healthcare professionals and patient health outcomes. To explore the influence of some of the characteristics of the printed educational materials (e.g. source, content, format) on their effect on healthcare professionals' practice and patient health outcomes. SEARCH METHODS: We searched MEDLINE, Embase, the Cochrane Central Register of Controlled Trials (CENTRAL), HealthStar, CINAHL, ERIC, CAB Abstracts, Global Health, and EPOC Register from their inception to 6 February 2019. We checked the reference lists of all included studies and relevant systematic reviews. SELECTION CRITERIA: We included randomised trials (RTs), controlled before-after studies (CBAs) and interrupted time series studies (ITSs) that evaluated the impact of PEMs on healthcare professionals' practice or patient health outcomes. We included three types of comparisons: (1) PEM versus no intervention, (2) PEM versus single intervention, (3) multifaceted intervention where PEM is included versus multifaceted intervention without PEM. Any objective measure of professional practice (e.g. prescriptions for a particular drug), or patient health outcomes (e.g. blood pressure) were included. DATA COLLECTION AND ANALYSIS: Two reviewers undertook data extraction independently. Disagreements were resolved by discussion. For analyses, we grouped the included studies according to study design, type of outcome and type of comparison. For controlled trials, we reported the median effect size for each outcome within each study, the median effect size across outcomes for each study and the median of these effect sizes across studies. Where data were available, we re-analysed the ITS studies by converting all data to a monthly basis and estimating the effect size from the change in the slope of the regression line between before and after implementation of the PEM. We reported median changes in slope for each outcome, for each study, and then across studies. We standardised all changes in slopes by their standard error, allowing comparisons and combination of different outcomes. We categorised each PEM according to potential effects modifiers related to the source of the PEMs, the channel used for their delivery, their content, and their format. We assessed the risks of bias of all the included studies. MAIN RESULTS: We included 84 studies: 32 RTs, two CBAs and 50 ITS studies. Of the 32 RTs, 19 were cluster RTs that used various units of randomisation, such as practices, health centres, towns, or areas. The majority of the included studies (82/84) compared the effectiveness of PEMs to no intervention. Based on the RTs that provided moderate-certainty evidence, we found that PEMs distributed to healthcare professionals probably improve their practice, as measured with dichotomous variables, compared to no intervention (median absolute risk difference (ARD): 0.04; interquartile range (IQR): 0.01 to 0.09; 3,963 healthcare professionals randomised within 3073 units). We could not confirm this finding using the evidence gathered from continuous variables (standardised mean difference (SMD): 0.11; IQR: -0.16 to 0.52; 1631 healthcare professionals randomised within 1373 units ), from the ITS studies (standardised median change in slope = 0.69; 35 studies), or from the CBA study because the certainty of this evidence was very low. We also found, based on RTs that provided moderate-certainty evidence, that PEMs distributed to healthcare professionals probably make little or no difference to patient health as measured using dichotomous variables, compared to no intervention (ARD: 0.02; IQR: -0.005 to 0.09; 935,015 patients randomised within 959 units). The evidence gathered from continuous variables (SMD: 0.05; IQR: -0.12 to 0.09; 6,737 patients randomised within 594 units) or from ITS study results (standardised median change in slope = 1.12; 8 studies) do not strengthen these findings because the certainty of this evidence was very low. Two studies (a randomised trial and a CBA) compared a paper-based version to a computerised version of the same PEM. From the RT that provided evidence of low certainty, we found that PEM in computerised versions may make little or no difference to professionals' practice compared to PEM in printed versions (ARD: -0.02; IQR: -0.03 to 0.00; 139 healthcare professionals randomised individually). This finding was not strengthened by the CBA study that provided very low certainty evidence (SMD: 0.44; 32 healthcare professionals). The data gathered did not allow us to conclude which PEM characteristics influenced their effectiveness. The methodological quality of the included studies was variable. Half of the included RTs were at risk of selection bias. Most of the ITS studies were conducted retrospectively, without prespecifying the expected effect of the intervention, or acknowledging the presence of a secular trend. AUTHORS' CONCLUSIONS: The results of this review suggest that, when used alone and compared to no intervention, PEMs may slightly improve healthcare professionals' practice outcomes and patient health outcomes. The effectiveness of PEMs compared to other interventions, or of PEMs as part of a multifaceted intervention, is uncertain.

User-Centered Design and Evaluation of a Web-Based Decision Aid for Older Adults Living With Mild Cognitive Impairment and Their Health Care Providers: Mixed Methods Study.

BACKGROUND: Mild cognitive impairment (MCI) is often considered a transitional state between normal and pathologic (eg, dementia) cognitive aging. Although its prognosis varies largely, the diagnosis carries the risk of causing uncertainty and overtreatment of older adults with MCI who may never progress to dementia. Decision aids help people become better informed and more involved in decision making by providing evidence-based information about options and possible outcomes and by assisting them in clarifying their personal values in relation to the decision to be made. OBJECTIVE: This study aimed to incorporate features that best support values clarification and adjust the level of detail of a web-based decision aid for individuals with MCI. METHODS: We conducted a rapid review to identify options to maintain or improve cognitive functions in individuals with MCI. The evidence was structured into a novel web-based decision aid designed in collaboration with digital specialists and graphic designers. Qualitative and user-centered evaluations were used to draw on users' knowledge, clarify values, and inform potential adoption in routine clinical practice. We invited clinicians, older adults with MCI, and their caregivers to evaluate the decision aid in 6 consecutive rounds, with new participants in each round. Quantitative data were collected using the Values Clarity and Informed subscales of the Decisional Conflict Scale, the System Usability Scale, the Ottawa Acceptability questionnaire, and a 5-point satisfaction rating scale. We verified their comprehension using a teach-back method and recorded usability issues. We recorded the audio and computer screen during the session. An inductive thematic qualitative analysis approach was used to identify and describe the issues that arose. After each round, an expert panel met to prioritize and find solutions to mitigate the issues. An integrated analysis was conducted to confirm our choices. RESULTS: A total of 7 clinicians (social workers, nurses, family physicians, psychologists) and 12 older (≥60 years) community-dwelling individuals with MCI, half of them women, with education levels going from none to university diploma, were recruited and completed testing. The thematic analysis revealed 3 major issues. First, the user should be guided through the decision-making process by tailoring the presentation of options to users' priorities using the values clarification exercise. Second, its content should be simple, but not simplistic, notably by using information layering, plain language, and pictograms. Third, the interface should be intuitive and user friendly, utilize pop-up windows and information tips, avoid drop-down menus, and limit the need to scroll down. The quantitative assessments corroborated the qualitative findings. CONCLUSIONS: This project resulted in a promising web-based decision aid that can support decision making for MCI intervention, based on the personal values and preferences of the users. Further ongoing research will allow its implementation to be tested in clinical settings.

A Web Application About Herd Immunity Using Personalized Avatars: Development Study.

BACKGROUND: Herd immunity or community immunity refers to the reduced risk of infection among susceptible individuals in a population through the presence and proximity of immune individuals. Recent studies suggest that improving the understanding of community immunity may increase intentions to get vaccinated. OBJECTIVE: This study aims to design a web application about community immunity and optimize it based on users' cognitive and emotional responses. METHODS: Our multidisciplinary team developed a web application about community immunity to communicate epidemiological evidence in a personalized way. In our application, people build their own community by creating an avatar representing themselves and 8 other avatars representing people around them, for example, their family or coworkers. The application integrates these avatars in a 2-min visualization showing how different parameters (eg, vaccine coverage, and contact within communities) influence community immunity. We predefined communication goals, created prototype visualizations, and tested four iterative versions of our visualization in a university-based human-computer interaction laboratory and community-based settings (a cafeteria, two shopping malls, and a public library). Data included psychophysiological measures (eye tracking, galvanic skin response, facial emotion recognition, and electroencephalogram) to assess participants' cognitive and affective responses to the visualization and verbal feedback to assess their interpretations of the visualization's content and messaging. RESULTS: Among 110 participants across all four cycles, 68 (61.8%) were women and 38 (34.5%) were men (4/110, 3.6%; not reported), with a mean age of 38 (SD 17) years. More than half (65/110, 59.0%) of participants reported having a university-level education. Iterative changes across the cycles included adding the ability for users to create their own avatars, specific signals about who was represented by the different avatars, using color and movement to indicate protection or lack of protection from infectious disease, and changes to terminology to ensure clarity for people with varying educational backgrounds. Overall, we observed 3 generalizable findings. First, visualization does indeed appear to be a promising medium for conveying what community immunity is and how it works. Second, by involving multiple users in an iterative design process, it is possible to create a short and simple visualization that clearly conveys a complex topic. Finally, evaluating users' emotional responses during the design process, in addition to their cognitive responses, offers insights that help inform the final design of an intervention. CONCLUSIONS: Visualization with personalized avatars may help people understand their individual roles in population health. Our app showed promise as a method of communicating the relationship between individual behavior and community health. The next steps will include assessing the effects of the application on risk perception, knowledge, and vaccination intentions in a randomized controlled trial. This study offers a potential road map for designing health communication materials for complex topics such as community immunity.

Professional training on shared decision making with older adults living with neurocognitive disorders: a mixed-methods implementation study.

BACKGROUND: Shared decision making with older adults living with neurocognitive disorders is challenging for primary healthcare professionals. We studied the implementation of a professional training program featuring an e-learning activity on shared decision making and five Decision Boxes on the care of people with neurocognitive disorders, and measured the program's effects. METHODS: In this mixed-methods study, we recruited healthcare professionals in family medicine clinics and homecare settings in the Quebec City area (Canada). The professionals signed up for training as a continuing professional development activity and answered an online survey before and after training to assess their knowledge, and intention to adopt shared decision making. We recorded healthcare professionals' access to each training component, and conducted telephone interviews with a purposeful sample of extreme cases: half had completed training and the other half had not. We performed bivariate analyses with the survey data and a thematic qualitative analysis of the interviews, as per the theory of planned behaviour. RESULTS: Of the 47 participating healthcare professionals, 31 (66%) completed at least one training component. Several factors restricted participation, including lack of time, training fragmentation into several components, poor adaptation of training to specific professions, and technical/logistical barriers. Ease of access, ease of use, the usefulness of training content and the availability of training credits fostered participation. Training allowed Healthcare professionals to improve their knowledge about risk communication (p = 0.02), and their awareness of the options (P = 0.011). Professionals' intention to adopt shared decision making was high before training (mean ± SD = 5.88 ± 0.99, scale from 1 to 7, with 7 high) and remained high thereafter (5.94 ± 0.9). CONCLUSIONS: The results of this study will allow modifying the training program to improve participation rates and, ultimately, uptake of meaningful shared decision making with patients living with neurocognitive disorders.

Talking about treatment benefits, harms, and what matters to patients in radiation oncology: an observational study.

BACKGROUND: Shared decision making is associated with improved patient outcomes in radiation oncology. Our study aimed to capture how shared decision-making practices-namely, communicating potential harms and benefits and discussing what matters to patients-occur in usual care. METHODS: We invited a convenience sample of clinicians and patients in a radiation oncology clinic to participate in a mixed methods study. Prior to consultations, clinicians and patients completed self-administered questionnaires. We audio-recorded consultations and conducted qualitative content analysis. Patients completed a questionnaire immediately post-consultation about their recall and perceptions. RESULTS: 11 radiation oncologists, 4 residents, 14 nurses, and 40 patients (55% men; mean age 64, standard deviation or SD 9) participated. Patients had a variety of cancers; 30% had been referred for palliative radiotherapy. During consultations (mean length 45 min, SD 16), clinicians presented a median of 8 potential harms (interquartile range 6-11), using quantitative estimates 17% of the time. Patients recalled significantly fewer harms (median recall 2, interquartile range 0-3, t(38) = 9.3, p < .001). Better recall was associated with discussing potential harms with a nurse after seeing the physician (odds ratio 7.5, 95% confidence interval 1.3-67.0, p = .04.) Clinicians initiated 63% of discussions of harms and benefits while patients and families initiated 69% of discussions about values and preferences (Chi-squared(1) = 37.8, p < .001). 56% of patients reported their clinician asked what mattered to them. CONCLUSIONS: Radiation oncology clinics may wish to use interprofessional care and initiate more discussions about what matters to patients to heed Jain's (2014) reminder that, "a patient isn't a disease with a body attached but a life into which a disease has intruded."

How often do both core competencies of shared decision making occur in family medicine teaching clinics?

OBJECTIVE: To assess how often risk communication and values clarification occur in routine family medicine practice and to explore factors associated with their occurrence. DESIGN: Qualitative and quantitative cross-sectional study. SETTING: Five university-affiliated family medicine teaching clinics across Quebec. PARTICIPANTS: Seventy-one health professionals (55% physicians, 35% residents, 10% nurses or dietitians) and 238 patients (76% women; age range 16 to 82 years old). MAIN OUTCOME MEASURES: The presence or absence of risk communication and values clarification during visits in which decisions were made was determined. Factors associated with the primary outcome (both competencies together) were identified. The OPTION5 (observing patient involvement in decision making) instrument was used to validate the dichotomous outcome. RESULTS: The presence of risk communication and values clarification during visits was associated with OPTION5 scores (area under the curve of 0.80, 95% CI 0.75 to 0.86, P < .001). Both core competencies of shared decision making occurred in 150 of 238 (63%) visits (95% CI 54% to 70%). Such an occurrence was more likely when the visit included discussion about beginning something new, treatment options, or postponing a decision, as well as when health professionals preferred a collaborative decision-making style and when the visit included more decisions or was longer. Alone, risk communication occurred in 203 of 238 (85%) visits (95% CI 82% to 96%) and values clarification in 162 of 238 (68%) visits (95% CI 61% to 75%). CONCLUSION: Health professionals in family medicine are making an effort to engage patients in shared decision making in routine daily practice, especially when there is time to do so. The greatest potential for improvement might lie in values clarification; that is, discussing what matters to patients and families.

Twelve Lessons Learned for Effective Research Partnerships Between Patients, Caregivers, Clinicians, Academic Researchers, and Other Stakeholders.

Research increasingly means that patients, caregivers, health professionals, other stakeholders, and academic investigators work in partnership. This requires effective collaboration rooted in mutual respect, involvement of all participants, and good communication. Having conducted such partnered research over multiple projects, and having recently completed a project together funded by the Patient-Centered Outcomes Research Institute, we collaboratively developed a list of 12 lessons we have learned about how to ensure effective research partnerships. To foster a culture of mutual respect, hold early in-person meetings, with introductions focused on motivation, offer appropriate orientation for everyone, and maintain awareness of individual and project goals. To actively involve all team members, it is important to ensure sufficient funding for everyone's participation, to ask for and recognize diverse contributions, and to seek the input of quiet members. To facilitate good communication, teams should carefully consider labels, avoid jargon and acronyms, judiciously use homogeneous and heterogeneous subgroups, and keep progress visible. In offering pragmatic, actionable lessons we have learned through our separate and shared experiences, we hope to help foster more patient-centered research via productive and enjoyable research collaborations.

The OptimaMed intervention to reduce inappropriate medications in nursing home residents with severe dementia: results from a quasi-experimental feasibility pilot study.

BACKGROUND: Medication regimens in nursing home (NH) residents with severe dementia should be frequently reviewed to avoid inappropriate medication, overtreatment and adverse drug events, within a comfort care approach. This study aimed at testing the feasibility of an interdisciplinary knowledge exchange (KE) intervention using a medication review guidance tool categorizing medications as either "generally", "sometimes" or "exceptionally" appropriate for NH residents with severe dementia. METHODS: A quasi-experimental feasibility pilot study with 44 participating residents aged 65 years or over with severe dementia was carried out in three NH in Quebec City, Canada. The intervention comprised an information leaflet for residents' families, a 90-min KE session for NH general practitioners (GP), pharmacists and nurses focusing on the medication review guidance tool, a medication review by the pharmacists for participating residents with ensuing team discussion on medication changes, and a post-intervention KE session to obtain feedback from team staff. Medication regimens and levels of pain and of agitation of the participants were evaluated at baseline and at 4 months post-intervention. A questionnaire for team staff explored perceived barriers and facilitators. Statistical differences in measures comparing pre and post-intervention were assessed using paired t-tests and Cochran's-Q tests. RESULTS: The KE sessions reached 34 NH team staff (5 GP, 4 pharmacists, 6 heads of care unit and 19 staff nurses). Forty-four residents participated in the study and were followed for a mean of 104 days. The total number of regular medications was 372 pre and 327 post-intervention. The mean number of regular medications per resident was 7.86 pre and 6.81 post-intervention. The odds ratios estimating the risks of using any regular medication or a "sometimes appropriate" medication post-intervention were 0.81 (95% CI: 0.71-0.92) and 0.83 (95% CI: 0.74-0.94), respectively. CONCLUSION: A simple KE intervention using a medication review guidance tool categorizing medications as being either "generally", "sometimes" or "exceptionally" appropriate in severe dementia was well received and accompanied by an overall reduction in medication use by NH residents with severe dementia. Levels of agitation were unaffected and there was no clinically significant changes in levels of pain. Staff feedback provided opportunities to improve the intervention.

Key stakeholders' views on the quality of care and services available to frail seniors in Canada.

BACKGROUND: Frail seniors often receive ineffective care, which does not meet their needs. It is still unclear how healthcare systems should be redesigned to be more sensitive to the needs and values of frail seniors and their caregivers. We thus aimed to describe key stakeholders' perspectives on the current healthcare and services available to frail seniors. METHODS: In this qualitative descriptive study, we conducted semi-structured interviews with a convenience sample of 42 frail seniors, caregivers, clinicians, or healthcare administrators/decision makers involved in frail senior care from five Canadian provinces. We explored participants' perspectives on the quality of care and services for frail seniors. We used an inductive/deductive thematic data analysis approach based on the Square-of-Care model, including emerging themes using the constant comparison method. RESULTS: We grouped participants' perspectives into strengths, weaknesses and opportunities for improvement, and then into nine themes: care processes, continuity of care, social frailty, access to healthcare and services, models of healthcare delivery, cost of care, healthcare staff management and professional development of healthcare providers, material resources and environmental design of healthcare facilities, and coordination of care. Our findings suggest redesigning assessment, communication with frail seniors and their caregivers, targeting care and services to the needs, and integrating care better across settings and in time. CONCLUSIONS: A systematic identification of frail older people is the first step to adapt healthcare systems to this population's needs. Participation of frail older people and their caregivers to decision making would also allow choosing care plans meeting their care goals. The integration of care and services across settings, over time, and with various providers, is also needed to meet frail senior needs.

Pregnant women's views on how to promote the use of a decision aid for Down syndrome prenatal screening: a theory-informed qualitative study.

BACKGROUND: For pregnant women and their partners, the decision to undergo Down syndrome prenatal screening is difficult. Patient decision aids (PtDA) can help them make an informed decision. We aimed to identify behaviour change techniques (BCTs) that would be useful in an intervention to promote the use of a PtDA for Down syndrome prenatal screening, and to identify which of these BCTs pregnant women found relevant and acceptable. METHODS: Using the Behaviour Change Wheel and the Theoretical Domains Framework, we conducted a qualitative descriptive study. First, a group of experts from diverse professions, disciplines and backgrounds (eg. medicine, engineering, implementation science, community and public health, shared decision making) identified relevant BCTs. Then we recruited pregnant women consulting for prenatal care in three clinical sites: a family medicine group, a birthing centre (midwives) and a hospital obstetrics department in Quebec City, Canada. To be eligible, participants had to be at least 18 years old, having recently given birth or at least 16 weeks pregnant with a low-risk pregnancy, and have already decided about prenatal screening. We conducted three focus groups and asked questions about the relevance and acceptability of the BCTs. We analysed verbatim transcripts and reduced the BCTs to those the women found most relevant and acceptable. RESULTS: Our group of experts identified 25 relevant BCTs relating to information, support, consequences, others' approval, learning, reward, environmental change and mode of delivery. Fifteen women participated in the study with a mean age of 27 years. Of these, 67% (n = 10) were pregnant for the first time, 20% (n = 3) had difficulty making the decision to take the test, and 73% had made the decision with their partner. Of the 25 BCTs identified using the Behaviour Change Wheel, the women found the following 10 to be most acceptable and relevant: goal setting (behaviour), goal setting (results), problem solving, action plan, social support (general), social support (practical), restructuring the physical environment, prompts/cues, credible sources and modelling or demonstration of the behaviour. CONCLUSIONS: An intervention to promote PtDA use among pregnant women for Down syndrome prenatal screening should incorporate the 10 BCTs identified.

Psychosocial Factors of Health Professionals' Intention to Use a Decision Aid for Down Syndrome Screening: Cross-Sectional Quantitative Study.

BACKGROUND: Decisions about prenatal screening for Down syndrome are difficult for women, as they entail risk, potential loss, and regret. Shared decision making increases women's knowledge of their choices and better aligns decisions with their values. Patient decision aids foster shared decision making but are rarely used in this context. OBJECTIVE: One of the most promising strategies for implementing shared decision making is distribution of decision aids by health professionals. We aimed to identify factors influencing their intention to use a DA during prenatal visit for decisions about Down syndrome screening. METHODS: We conducted a cross-sectional quantitative study. Using a Web panel, we conducted a theory-based survey of health professionals in Quebec province (Canada). Eligibility criteria were as follows: (1) family physicians, midwives, obstetrician-gynecologists, or trainees in these professions; (2) involved in prenatal care; and (3) working in Quebec province. Participants watched a video depicting a health professional using a decision aid during a prenatal consultation with a woman and her partner, and then answered a questionnaire based on an extended version of the theory of planned behavior, including some of the constructs of the theoretical domains framework. The questionnaire assessed 8 psychosocial constructs (attitude, anticipated regret, subjective norm, self-identity, moral norm, descriptive norm, self-efficacy, and perceived control), 7 related sets of behavioral beliefs (advantages, disadvantages, emotions, sources of encouragement or discouragement, incentives, facilitators, and barriers), and sociodemographic data. We performed descriptive, bivariate, and multiple linear regression analyses to identify factors influencing health professionals' intention to use a decision aid. RESULTS: Among 330 health professionals who completed the survey, 310 met the inclusion criteria: family physicians, 55.2% (171/310); obstetrician-gynecologists, 33.8% (105/310); and midwives, 11.0% (34/310). Of these, 80.9% were female (251/310). Mean age was 39.6 (SD 11.5) years. Less than half were aware of any decision aids at all. In decreasing order of importance, factors influencing their intention to use a decision aid for Down syndrome prenatal screening were as follows: self-identity (beta=.325, P<.001), attitude (beta=.297, P<.001), moral norm (beta=.288, P<.001), descriptive norm (beta=.166, P<.001), and anticipated regret (beta=.099, P=.003). Underlying behavioral beliefs significantly related to intention were that the use of a decision aid would promote decision making (beta=.117, 95% CI 0.043-0.190), would reassure health professionals (beta=.100, 95% CI 0.024-0.175), and might require more time than planned for the consultation (beta=-.077, 95% CI -0.124 to -0.031). CONCLUSIONS: We identified psychosocial factors that could influence health professionals' intention to use a decision aid about Down syndrome screening. Strategies should remind them of the following: (1) using a decision aid for this purpose should be a common practice, (2) it would be expected of someone in their societal role, (3) the experience of using it will be satisfying and reassuring, and (4) it is likely to be compatible with their moral values.

Use of a patient decision aid for prenatal screening for Down syndrome: what do pregnant women say?

BACKGROUND: Patient decision aids (PtDAs) help people make difficult, values-sensitive decisions. Prenatal screening for assessing the risk of genetic conditions in the fetus is one such decision and patient decision aids are rarely used in this clinical context. We sought to identify factors influencing pregnant women's use of a patient decision aid for deciding about prenatal screening for Down syndrome (DS). METHODS: This qualitative study was embedded in a sequential mixed-methods research program whose main aim is to implement shared decision-making (SDM) in the context of prenatal screening for DS in the province of Quebec, Canada. We planned to recruit a purposive sample of 45 pregnant women with low-risk pregnancy consulting for prenatal care at three clinical sites. Participating women watched a video depicting a prenatal care follow-up during which a pregnant woman, her partner and a health professional used a PtDA to decide about prenatal screening for DS. The women were then interviewed about factors that would influence the use of this PtDA using questions based on the Theoretical Domains Framework (TDF). We performed content analysis of transcribed verbatim interviews. RESULTS: Out of 216 eligible women, 100 agreed to participate (46% response rate) and 46 were interviewed. Regarding the type of health professional responsible for their prenatal care, 19 participants (41%) reported having made a decision about prenatal screening for DS with an obstetrician-gynecologist, 13 (28%) with a midwife, 12 (26%) with a family physician, and two (4%) decided on their own. We identified 54 factors that were mapped onto nine of the 12 TDF domains. The three most frequently-mentioned were: opinion of the pregnant woman's partner (n = 33, 72%), presentation of the PtDA by health professional and a discussion (n = 27, 72%), and not having encountered a PtDA (n = 26, 57%). CONCLUSION: This study allowed us to identify factors influencing pregnant women's use of a PtDA for prenatal screening for DS. Use of a PtDA by health professionals and patients is one step in providing the needed decision support and our study results will allow us to design an effective implementation strategy for PtDAs for prenatal screening for DS.