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.

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.

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.

Involving members of vulnerable populations in the development of patient decision aids: a mixed methods sequential explanatory study.

BACKGROUND: Patient decision aids aim to present evidence relevant to a health decision in understandable ways to support patients through the process of making evidence-informed, values-congruent health decisions. It is recommended that, when developing these tools, teams involve people who may ultimately use them. However, there is little empirical evidence about how best to undertake this involvement, particularly for specific populations of users such as vulnerable populations. METHODS: To describe and compare the development practices of research teams that did and did not specifically involve members of vulnerable populations in the development of patient decision aids, we conducted a secondary analysis of data from a systematic review about the development processes of patient decision aids. Then, to further explain our quantitative results, we conducted semi-structured telephone interviews with 10 teams: 6 that had specifically involved members of vulnerable populations and 4 that had not. Two independent analysts thematically coded transcribed interviews. RESULTS: Out of a total of 187 decision aid development projects, 30 (16%) specifically involved members of vulnerable populations. The specific involvement of members of vulnerable populations in the development process was associated with conducting informal needs assessment activities (73% vs. 40%, OR 2.96, 95% CI 1.18-7.99, P = .02) and recruiting participants through community-based organizations (40% vs. 11%, OR 3.48, 95% CI 1.23-9.83, P = .02). In interviews, all developers highlighted the importance, value and challenges of involving potential users. Interviews with developers whose projects had involved members of vulnerable populations suggested that informal needs assessment activities served to center the decision aid around users' needs, to better avoid stigma, and to ensure that the topic truly matters to the community. Partnering with community-based organizations may facilitate relationships of trust and may also provide a non-threatening and accessible location for research activities. CONCLUSIONS: There are a small number of key differences in the development processes for patient decision aids in which members of vulnerable populations were or were not specifically involved. Some of these practices may require additional time or resources. To address health inequities, researchers, communities and funders may need to increase awareness of these approaches and plan accordingly.

What factors influence health professionals to use decision aids for Down syndrome prenatal screening?

BACKGROUND: Health professionals are expected to engage pregnant women in shared decision making to help them make informed values-based decisions about prenatal screening. Patient decision aids (PtDAs) foster shared decision-making, but are rarely used in this context. Our objective was to identify factors that could influence health professionals to use a PtDA for decisions about prenatal screening for Down syndrome during a clinical pregnancy follow-up. METHODS: We planned to recruit a purposive sample of 45 health professionals (obstetrician-gynecologists, family physicians and midwives) involved in the care of pregnant women in three clinical sites (15 per site). Participating health professionals first watched a video showing two simulated consecutive prenatal follow-up consultations during which a pregnant woman, her partner and a health professional used a PtDA about Down syndrome prenatal screening. Participants were then interviewed about factors that would influence their use of the PtDA. Questions were based on the Theoretical Domains Framework. We performed content analyses of transcribed verbatim interviews. RESULTS: Out of 42 eligible health professionals approached, 36 agreed to be interviewed (86 % response rate). Of these, 27 were female (75 %), nine were obstetrician-gynecologists (25 %), 15 were family physicians (42 %), and 12 were midwives (33 %), with a mean age of 42.1 ± 11.6 years old. We identified 35 distinct factors reported by 20 % or more participants that were mapped onto 10 of the 12 of the Theoretical Domains Framework domains. The six most frequently mentioned factors influencing use of the PtDA were: 1) a positive appraisal (n = 29, 81 %, beliefs about consequences domain); 2) its availability in the office (n = 27, 75 %, environmental context and resources domain); 3) colleagues' approval (n = 27, 75 %, social influences domain); 4) time constraints (n = 26, 72 %, environmental context and resources domain); 5) finding it a relevant source of information (n = 24, 67 %, motivation and goals domain); and 6) not knowing any PtDAs (n = 23, 64 %, knowledge domain). CONCLUSIONS: Appraisal, PtDA availability, peer approval, time concerns, evidence and PtDA awareness all affect whether health professionals are likely to use a PtDA to help pregnant women make informed decision about Down syndrome screening. Implementation strategies will need to address these factors.

Decision aids for home and community care: a systematic review.

OBJECTIVES: Decision aids (DAs) for clients in home and community care can support shared decision-making (SDM) with patients, healthcare teams and informal caregivers. We aimed to identify DAs developed for home and community care, verify their adherence to international DA criteria and explore the involvement of interprofessional teams in their development and use. DESIGN: Systematic review reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. DATA SOURCES: Six electronic bibliographic databases (MEDLINE, Embase, CINAHL Plus, Web of Science, PsycINFO and the Cochrane Library) from inception to November 2019, social media and grey literature websites up to January 2021. ELIGIBILITY CRITERIA: DAs designed for home and community care settings or including home care or community services as options. DATA EXTRACTION AND SYNTHESIS: Two reviewers independently reviewed citations. Analysis consisted of a narrative synthesis of outcomes and a thematic analysis. DAs were appraised using the International Patient Decision Aid Standards (IPDAS). We collected information on the involvement of interprofessional teams, including nurses, in their development and use. RESULTS: After reviewing 10 337 database citations and 924 grey literature citations, we extracted characteristics of 33 included DAs. DAs addressed a variety of decision points. Nearly half (42%) were relevant to older adults. Several DAs did not meet IPDAS criteria. Involvement of nurses and interprofessional teams in the development and use of DAs was minimal (33.3% of DAs). CONCLUSION: DAs concerned a variety of decisions, especially those related to older people. This reflects the complexity of decisions and need for better support in this sector. There is little evidence about the involvement of interprofessional teams in the development and use of DAs in home and community care settings. An interprofessional approach to designing DAs for home care could facilitate SDM with people being cared for by teams. PROSPERO REGISTRATION NUMBER: CRD42020169450.

Shared decision-making in Canada: Update on integration of evidence in health decisions and patient-centred care government mandates.

In Canada, government mandates for patient-centred care (PCC) vary across the 10 provinces and three territories. Although basic medical and hospital services are provided for all, health care options for patients also depend on having private insurance. Thus, the current design of the Canadian healthcare system has several implications for PCC and shared decision-making (SDM). Since 2007, this is our fourth update on SDM in Canada. The aim of this paper is to provide an update on the current state of SDM and patient and public involvement in Canada. Overall, we still observed the difficulty of implementing any sort of national strategy partly because of the decentralized nature of the healthcare system. Second, national professional education programs are complicated by licensure and scope of practice variations across jurisdictions. Third, there are variations in the availability of different options covered by universal healthcare. Canada has experienced some favorable development as PCC is now explicitly articulated in the policies of most provinces and territories and there are increased efforts to give patients more access to their electronic health records. However, patient and public engagement (PPE) reform in health programs and governance remains an exception, and continuing centralization of governance structures may reduce their responsiveness to patient priorities. In a 2018 survey, 47.2% of respondents reported that they were not told by their health professional that they had a choice about treatment. Nonetheless, decision aids and decision coaching are increasingly available for health-related decisions and the Ottawa Hospital Research Institute's decision aid inventory has ensured continued leadership in this area. Diverse jurisdictions are starting to embed decision aids into care pathways, with some decision aids being included in clinical practice guidelines. The COVID-19 pandemic may have had a negative impact on SDM by removing decision choices due to emergency public health mandates, but stimulated new research and decision aids. Canada continues to assign health research funding to SDM and PCC, and a program dedicated to patient-oriented research is central to this effort. Guides and frameworks are increasingly available for planning and evaluating PPE. Finally, various initiatives are attempting to involve and empower Indigenous peoples through PPE and SDM.

Family Medicine Supervisors' Preferences for Improving Their Teaching Skills in Senior Care.

BACKGROUND AND OBJECTIVES: Many clinical supervisors in family medicine feel ill-equipped to teach senior care to their family medicine residents (trainees). We therefore sought to explore their preferred learning strategies for improving their clinical and teaching skills with regard to senior care. METHODS: In this qualitative study, we conducted focus groups and interviews with supervisors from four family medicine clinics, to explore their preferred educational strategies. We selected four clinics using a maximum-variation strategy, based on a survey assessing continuing professional development (CPD) needs. The qualitative thematic analysis followed an inductive/deductive approach based on McGuire's attributes of persuasive communication. RESULTS: The four focus groups and nine interviews with 53 supervisors (37 physicians, 9 nurses, 4 psychologists, 1 social worker, 1 nutritionist, 1 sexologist) revealed that supervisors preferred being trained by experienced trainers specialized in senior care, from various professional backgrounds, and knowledgeable about local community resources. They valued practical training the most, such as clinical case discussions based on real cases, clinical tools, and mentoring. The findings also suggest that training in senior care should be adapted to the supervisors' experience, profession, workload, and scope of intervention. Supervisors valued repeated CPD with longitudinal follow-up and easy access to trainers and to up-to-date training content. CONCLUSIONS: The findings of this project will allow those who design CPD activities to adapt such activities to the preferences of supervisors, so as to improve their clinical and teaching skills in senior care. This, in turn, may help supervisors to embody an appealing professional role model for learners.

User Involvement in the Design and Development of Patient Decision Aids and Other Personal Health Tools: A Systematic Review.

BACKGROUND: When designing and developing patient decision aids, guidelines recommend involving patients and stakeholders. There are myriad ways to do this. We aimed to describe how such involvement occurs by synthesizing reports of patient decision aid design and development within a user-centered design framework and to provide context by synthesizing reports of user-centered design applied to other personal health tools. METHODS: We included articles describing at least one development step of 1) a patient decision aid, 2) user- or human-centered design of another personal health tool, or 3) evaluation of these. We organized data within a user-centered design framework comprising 3 elements in iterative cycles: understanding users, developing/refining prototype, and observing users. RESULTS: We included 607 articles describing 325 patient decision aid projects and 65 other personal health tool projects. Fifty percent of patient decision aid projects reported involving users in at least 1 step for understanding users, 35% in at least 1 step for developing/refining the prototype, and 84% in at least 1 step for observing users' interaction with the prototype. In comparison, other personal health tool projects reported 91%, 49%, and 92%, respectively. A total of 74% of patient decision aid projects and 92% of other personal health tool projects reported iterative processes, both with a median of 3 iterative cycles. Preliminary evaluations such as usability or feasibility testing were reported in 66% of patient decision aid projects and 89% of other personal health tool projects. CONCLUSIONS: By synthesizing design and development practices, we offer evidence-based portraits of user involvement. Those wishing to further align patient decision aid design and development with user-centered design methods could involve users earlier, design and develop iteratively, and report processes in greater detail.

Assessing the Quality of Care Provided to Older Persons with Frailty in Five Canadian Provinces, Using Administrative Data.

Nous avons examiné la qualité des soins fournis aux personnes âgées fragiles dans cinq provinces canadiennes à partir de données administratives sur la santé. Dans chaque province, nous avons considéré les personnes âgées fragiles en fonction de deux cohortes : les personnes décédées et les personnes vivantes. Des règles de décision ont été utilisées pour déterminer quelles personnes étaient frêles, soit celles résidant en établissement de soins de longue durée, qui étaient en phase terminale ou dont le profil correspondait à deux des sept domaines identifiés. Ces domaines étaient fondés sur des échelles de fragilité, des discussions avec des gériatres et des indicateurs d'utilisation des services de santé. Nous avons évalué la qualité des soins à l'aide des indicateurs de qualité suivants : diminution de la durée de l'hospitalisation, diminution du nombre de réadmissions à l'hôpital, diminution du nombre de visites à l'urgence, augmentation de la continuité des soins fournis par un médecin de famille, diminution de l'utilisation de la ventilation mécanique et diminution du nombre d'admissions aux soins intensifs. À l'aide d'analyses de régression, nous avons également constaté que le sexe masculin et l'âge avancé étaient associés à une moins bonne qualité de soins dans les deux cohortes. Cette étude fournit des données de base qui permettront d'évaluer les futurs efforts visant à améliorer la qualité des soins offerts aux personnes âgées fragiles.We examined the quality of care provided to older persons with frailty in five Canadian provinces, using administrative health data. In each province, we identified two cohorts of older persons with frailty: decedents and living persons. Using decision rules, we considered individuals to be frail if they were long-term care residents, terminally ill, or met at least two of seven domains, which were based on frailty scales, geriatrician discussions, and health service utilization indicators. We assessed quality of care using selected quality indicators: decrease in length of hospital stay, decrease in the number of in-patient readmissions, decrease in the number of emergency department visits, increase in the level of family physician continuity of care, decrease in the use of mechanical ventilation, and decrease in the number of admissions to intensive care. Using regression analyses, we also found male sex and older age were associated with poorer quality of care in both cohorts. This study provides baseline data for evaluating future efforts to improve the quality of care provided to older persons with frailty.

Impact of adding a video to patient education on quality of life among adults with atrial fibrillation: a randomized controlled trial.

OBJECTIVE: To assess whether adding a video on atrial fibrillation (AF) to a face-to-face educational session improves quality of life (QoL), knowledge, and health resource utilization (HRU) among AF patients. METHODS: In this parallel clinical trial, adults with AF received a face-to-face educational session on AF and were randomly allocated to watch an educational video or not. Self-reported questionnaires measured QoL (primary outcome; score 0-100), AF knowledge (score 0-25), and HRU. Data were collected before and after interventions. Within- and between-group changes were estimated by mixed models. RESULTS: Sixty participants (age: 56 ± 13 years; men: n = 41) were allocated to watch the video after education (n = 30) or to receive education only (n = 30). Within groups over time, QoL and knowledge significantly improved. Knowledge increased by 2.3 units (95% confidence interval: 0.5-4.1) more in participants who watched the video than in others (P = 0.014). Changes in QoL and HRU were not different between groups. CONCLUSION: Complementing education with a video on AF did not result in additional positive impacts on QoL and HRU among AF adults but led to greater improvements in AF knowledge. PRACTICE IMPLICATIONS: The video on AF could be used as part of educational sessions to increase AF knowledge in AF patients.

Reducing complexity of patient decision aids for community-based older adults with dementia and their caregivers: multiple case study of Decision Boxes.

OBJECTIVES: To identify patient decision aids' features to limit their complexity for older adults with dementia and their family caregivers. DESIGN: Mixed method, multiple case study within a user-centred design (UCD) approach. SETTING: Community-based healthcare in the province of Quebec in Canada. PARTICIPANTS: 23 older persons (aged 65+ years) with dementia and their 27 family caregivers. RESULTS: During three UCD evaluation-modification rounds, participants identified strengths and weaknesses of the patient decision aids' content and visual design that influenced their complexity. Weaknesses of content included a lack of understanding of the decision aids' purpose and target audience, missing information, irrelevant content and issues with terminology and sentence structure. Weaknesses of visual design included critics about the decision aids' general layout (density, length, navigation) and their lack of pictures. In response, the design team implemented a series of practical features and design strategies, comprising: a clear expression of the patient decision aids' purpose through simple text, picture and personal stories; systematic and frequent use of pictograms illustrating key points and helping structure patient decision aids' general layout; a glossary; removal of scientific references from the main document; personal stories to clarify more difficult concepts; a contact section to facilitate implementation of the selected option; GRADE ratings to convey the quality of the evidence; a values clarification exercise formatted as a checklist and presented at the beginning of the document to streamline navigation; involvement of a panel of patient/caregiver partners to guide expression of patient priorities; editing of the text to a sixth grade reading level; UCD process to optimise comprehensiveness and relevance of content and training of patients/caregivers in shared decision-making. CONCLUSIONS: The revised template for patient decision aids is designed to meet the needs of adults living with dementia and their caregivers better, which may translate into fewer evaluation-modification rounds.

Modified Delphi survey for the evidence summarisation of patient decision aids: Study protocol.

INTRODUCTION: Information included in a patient decision aid (PDA) can significantly influence patients' decisions and is, therefore, expected to be evidence-based and rigorously selected and summarised. PDA developers have not yet agreed on a standardised process for the selection and summarisation of the supporting evidence. We intend to generate consensus on a process (and related steps and criteria) for selecting and summarising evidence for PDAs using a modified Delphi survey. METHODS AND ANALYSIS: We will develop an evidence summarisation process specific to PDA development by using a consensus-based Delphi approach, surveying international experts and stakeholders with two to three rounds. To increase generalisability and acceptability, we will distribute the survey to the following stakeholder groups: PDA developers, researchers with expertise in shared decision making, PDA development and evidence summarisation, members of the International Patient Decision Aids Standards (IPDAS) collaboration, policy makers with expertise in PDA certification and patient stakeholder groups. For each criterion, if at least 80% of survey participants rank the criterion as most important/least important, we will consider that consensus has been achieved. ETHICS AND DISSEMINATION: It is critical for PDAs to have accurate and trustworthy evidence-based information about the risks and benefits of health treatments and tests, as these decision aids help patients make important choices. We want to generate consensus on an approach for selecting and summarising the evidence included in PDAs, which can be widely implemented by PDA developers. Dartmouth College's Committee for the Protection of Human Subjects approved this protocol. We will publish our results in a peer reviewed journal.

An Analytical Mobile App for Shared Decision Making About Prenatal Screening: Protocol for a Mixed Methods Study.

BACKGROUND: Decisions about prenatal screening to assess the risk of genetic conditions such as Down syndrome are complex and should be well informed. Moreover, the number of available tests is increasing. Shared decision making (SDM) about testing could be facilitated by decision aids powered by mobile technology. OBJECTIVE: In this mixed methods study, we aim to (1) assess women's needs and preferences regarding using an app for considering prenatal screening, (2) develop a decision model using the analytical hierarchy process, and (3) develop an analytical app and assess its usability and usefulness. METHODS: In phase 1, we will assess the needs of 90 pregnant women and their partners (if available). We will identify eligible participants in 3 clinical sites (a midwife-led birthing center, a family practice clinic, and an obstetrician-led hospital-based clinic) in Quebec City and Montreal, Canada. Using semistructured interviews, we will assess participants' attitudes toward mobile apps for decision making about health, their current use of apps for health purposes, and their expectations of an app for prenatal testing decisions. Self-administered questionnaires will collect sociodemographic information, intentions to use an app for prenatal testing, and perceived importance of decision criteria. Qualitative data will be transcribed verbatim and analyzed thematically. Quantitative data will be analyzed using descriptive statistics and the analytic hierarchy process (AHP) method. In phase 2, we will develop a decision model using the AHP whereby users can assign relative importance to criteria when deciding between options. We will validate the model with potential users and a multidisciplinary team of patients, family physicians, primary care researchers, decision sciences experts, engineers, and experts in SDM, genetics, and bioethics. In phase 3, we will develop a prototype of the app using the results of the first 2 phases, pilot test its usefulness and usability among a sample of 15 pregnant women and their partners (if available), and improve it through 3 iterations. Data will be collected with a self-administered questionnaire. Results will be analyzed using descriptive statistics. RESULTS: Recruitment for phase 1 will begin in 2019. We expect results to be available in 2021. CONCLUSIONS: This study will result in a validated analytical app that will provide pregnant women and their partners with up-to-date information about prenatal screening options and their risks and benefits. It will help them clarify their values and enable them to weigh the options to make informed choices consistent with their preferences and values before meeting face-to-face with their health care professional. The app will be easy to update with the latest information and will provide women with a user-friendly experience using their smartphones or tablets. This study and the resulting app will contribute to high-quality SDM between pregnant women and their health care team. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/13321.