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Background Informal caregivers often serve as decision makers for dependent or vulnerable individuals facing health care decisions. Decision regret is one of the most prevalent outcomes reported by informal caregivers who have made such decisions. Objective To examine levels of decision regret and its predictors among informal caregivers who have made health-related decisions for a loved one. Data sources We performed a systematic search of Embase, MEDLINE, Web of Science, and Google Scholar up to November 2018. Participants were informal caregivers, and the outcome was decision regret as measured using the Decision Regret Scale (DRS). Review methods Two reviewers independently selected eligible studies, extracted data, and assessed the methodological quality of studies using the Mixed Methods Appraisal Tool. We performed a narrative synthesis and presented predictors of decision regret using a conceptual framework, dividing the predictors into decision antecedents, decision-making process, and decision outcomes. Results We included 16 of 3003 studies identified. Most studies ( n = 13) reported a mean DRS score ranging from 7.0 to 32.3 out of 100 (median = 14.3). The methodological quality of studies was acceptable. We organized predictors and their estimated effects (β) or odds ratio (OR) with 95% confidence interval (CI) as follows: decision antecedents (e.g., caregivers’ desire to avoid the decision, OR 2.07, 95% CI [1.04–4.12], P = 0.04), decision-making process (e.g., caregivers’ perception of effective decision making, β = 0.49 [0.05, 0.93], P < 0.01), and decision outcomes (e.g., incontinence, OR = 4.4 [1.1, 18.1], P < 0.001). Conclusions This review shows that informal caregivers’ level of decision regret is generally low but is high for some decisions. We also identified predictors of regret during different stages of the decision-making process. These findings may guide future research on improving caregivers’ experiences.

PURPOSE Case management (CM) is a promising intervention for frequent users of health care services. Our research question was how and under what circumstances does CM in primary care work to improve outcomes among frequent users with chronic conditions? METHODS We conducted a realist synthesis, searching MEDLINE, CINAHL, Embase, and PsycINFO (1996 to September 2017) for articles meeting the following criteria: (1) population: adult frequent users with chronic disease, (2) intervention: CM in a primary care setting with a postintervention evaluation, and (3) primary outcomes: integration of services, health care system use, cost, and patient outcome measures. Academic and gray literature were evaluated for relevance and robustness. Independent reviewers extracted data to identify context, mechanism, and outcome (CMO) configurations. Analysis of CMO configurations allowed for the modification of an initial program theory toward a refined program theory. RESULTS Of the 9,295 records retrieved, 21 peer-reviewed articles and an additional 89 documents were retained. We evaluated 19 CM interventions and identified 11 CMO configurations. The development of a trusting relationship fostering patient and clinician engagement in the CM intervention was recurrent in many CMO configurations. CONCLUSION Our refined program theory proposes that in the context of easy access to an experienced and trusted case manager who provides comprehensive care while maintaining positive interactions with patients, the development of this relationship fosters the engagement of both individuals and yields positive outcomes when the following mechanisms are triggered: patients and clinicians feel supported, respected, accepted, engaged, and committed; and patients feel less anxious, more secure, and empowered to self-manage.

Rationale Patients with complex care needs who frequently use health services often face challenges in managing their health and with integrated care, leading to frequent decision making. These complex care needs require a good understanding of health issues and their impact on daily life. As the decisional needs of this particular clientele have yet to be described in scientific literature, they warrant further study. Objectives To assess the decision-making needs of patients with complex care needs (PCCN) who frequently use health care services. Methods We performed a multicenter cross-sectional qualitative descriptive study in four institutions of the health and social services network of Quebec (Canada). We enrolled a convenience sample of PCCNs who frequently use health care services, health care providers, case managers, and decision-makers. We conducted interviews and focus groups and investigated decisional needs according to the Ottawa decision support framework: roles played and desired in the decision-making process, facilitators, and barriers. We conducted qualitative data collection and qualitative deductive/inductive thematic analysis within and across participating groups. Results In total, 16 patients, 38 clinicians, six case managers, and 14 decision-makers participated in the study. The decisional needs of this clientele are numerous, varied and different from those of the general population. We identified 26 decisional needs grouped under five themes. The most frequent decisions related to visiting the emergency department, moving to a nursing home, and adhering to a plan or treatment. In addition, we identified new themes such as patients' fear and mistrust of health professionals, differences of opinion between health professionals and health professionals' preconceived opinions of patients. Conclusion We observed a wide range of types of decisions that patients face and differences in decision-making needs across participating groups. Our results should inform future research on the development of a patient decision aid tool.

Background DOLCE (Improving Decision making On Location of Care with the frail Elderly and their caregivers) was a post-intervention clustered randomised trial (cRT) to assess the effect of training home care teams on interprofessional shared decision-making (IP-SDM). Alongside the cRT, we sought to monitor healthcare providers’ level of behavioural intention to engage in an IP-SDM approach and to identify factors associated with this intention. Methods We conducted two cross-sectional surveys in the province of Quebec, Canada, one each at cRT entry and exit. Healthcare providers (e.g. nurses, occupational therapists and social workers) in the 16 participating intervention and control sites self-completed an identical paper-based questionnaire at entry and exit. Informed by the Integrated model for explaining healthcare professionals’ clinical behaviour by Godin et al. (2008), we assessed their behavioural intention to engage in IP-SDM to support older adults and caregivers of older adults with cognitive impairment to make health-related housing decisions. We also assessed psychosocial variables underlying their behavioural intention and collected sociodemographic data. We used descriptive statistics and linear mixed models to account for clustering. Results Between 2014 and 2016, 271 healthcare providers participated at study entry and 171 at exit. At entry, median intention level was 6 in a range of 1 (low) to 7 (high) (Interquartile range (IQR): 5–6.5) and factors associated with intention were social influence (β = 0.27, P P P P P = 0.018) and working as a technician (β = − 0.41, P = 0.069) (compared to as a social worker). Conclusion Intention levels were high but decreased from entry to exit. Factors associated with intention also changed from study entry to study exit. These findings may be explained by the major restructuring of the health and social care system that took place during the 2 years of the study, leading to rapid staff turnover and organisational disturbance in home care teams. Future research should give more attention to contextual factors and design implementation interventions to withstand the disruption of system- and organisational-level disturbances. Trial registration Clinicaltrials.gov (NCT02244359). Registered on September 19th, 2014.

Background Chronic conditions such as diabetes and chronic obstructive pulmonary disease (COPD) are common and burdensome diseases primarily managed in primary care. Yet, evidence points to suboptimal quality of care for these conditions in primary care settings. Quality improvement collaboratives (QICs) are organized, multifaceted interventions that can be effective in improving chronic disease care processes and outcomes. In Quebec, Canada, the Institut national d’excellence en santé et en services sociaux (INESSS) has developed a large-scale QIC province-wide program called COMPAS+ that aims to improve the prevention and management of chronic diseases in primary care. This paper describes the protocol for our study, which aims to evaluate implementation and impact of COMPAS+ QICs on the prevention and management of targeted chronic diseases like diabetes and COPD. Methods This is a mixed-methods, integrated knowledge translation study. The quantitative component involves a controlled interrupted time series involving nine large integrated health centres in the province. Study sites will receive one of two interventions: the multifaceted COMPAS+ intervention (experimental condition) or a feedback only intervention (control condition). For the qualitative component, a multiple case study approach will be used to achieve an in-depth understanding of individual, team, organizational and contextual factors influencing implementation and effectiveness of the COMPAS+ QICs. Discussion COMPAS+ is a QI program that is unique in Canada due to its integration within the governance of the Quebec healthcare system and its capacity to reach many primary care providers and people living with chronic diseases across the province. We anticipate that this study will address several important gaps in knowledge related to large-scale QIC projects and generate strong and useful evidence (e.g., on leadership, organizational capacity, patient involvement, and implementation) having the potential to influence the design and optimisation of future QICs in Canada and internationally.

Background Decades of effectiveness research has established the benefits of using patient decision aids (PtDAs), yet broad clinical implementation has not yet occurred. Evidence to date is mainly derived from highly controlled settings; if clinicians and health care organizations are expected to embed PtDAs as a means to support person-centered care, we need to better understand what this might look like outside of a research setting. Aim This review was conducted in response to the IPDAS Collaboration’s evidence update process, which informs their published standards for PtDA quality and effectiveness. The aim was to develop context-specific program theories that explain why and how PtDAs are successfully implemented in routine healthcare settings. Methods Rapid realist review methodology was used to identify articles that could contribute to theory development. We engaged key experts and stakeholders to identify key sources; this was supplemented by electronic database (Medline and CINAHL), gray literature, and forward/backward search strategies. Initial theories were refined to develop realist context-mechanism-outcome configurations, and these were mapped to the Consolidated Framework for Implementation Research. Results We developed 8 refined theories, using data from 23 implementation studies (29 articles), to describe the mechanisms by which PtDAs become successfully implemented into routine clinical settings. Recommended implementation strategies derived from the program theory include 1) co-production of PtDA content and processes (or local adaptation), 2) training the entire team, 3) preparing and prompting patients to engage, 4) senior-level buy-in, and 5) measuring to improve. Conclusions We recommend key strategies that organizations and individuals intending to embed PtDAs routinely can use as a practical guide. Further work is needed to understand the importance of context in the success of different implementation studies.

INTRODUCTION Train-the-trainer (TTT) programs are frequently used to facilitate knowledge dissemination. However, little is known about the effectiveness of these programs. Therefore, we sought to assess the impact of TTT programs on learning and behavior of trainers for educating health and social professionals (trainees). METHODS Guided by the Cochrane Effective Practice and Organisation of Care, we conducted a systematic review. We searched 12 databases until April 2018 and extracted data according to the Population, Intervention, Comparison, Outcome model. Population was defined as trainers delivering training program to health care professionals, and the intervention consists in any organized activity provided by a trainer. There were no restrictive comparators, and outcomes were knowledge, attitude, skill, confidence, commitment, and behavior of trainers. We estimated the pooled effect size and its 95% confidence interval using a random-effect model. We performed a narrative synthesis when meta-analysis was not possible. RESULTS Of 11,202 potentially eligible references, we identified 16 unique studies. Studies were mostly controlled before-and-after studies and covered a unique training intervention. Targeted trainers were mostly nurses (n = 10) and physicians (n = 5). The most frequent measured outcome was knowledge (n = 12). TTT programs demonstrated significant effect on knowledge (Standardized mean deviation = 0.58; 95% CI = 0.11-1.06; I2 = 90%; P < .01; 10 studies). No studies measured trainers' ability to deliver the training program. DISCUSSION TTT programs may improve the knowledge of trainers. However, the heterogeneity and small number of studies hamper our ability to draw conclusions that are more robust.

Objective: To gain consensus on the Outcome Measures in Rheumatology (OMERACT) core domain set for rheumatology trials of shared decision making (SDM) interventions.Methods: The process followed the OMERACT Filter 2.1 methodology, and used consensus-building methods, with patients involved since the inception. After developing the draft core domain set in previous research, we conducted five steps: (i) improving the draft core domain set; (ii) developing and disseminating whiteboard videos to promote its understanding; (iii) conducting an electronic survey to gather feedback on the draft core domain set; (iv) finalizing the core domain set and developing summaries, a plenary session video and discussion boards to promote its understanding; and (v) conducting virtual workshops with voting to endorse the core domain set.Results: A total of 167 participants from 28 countries answered the survey (62% were patients/caregivers). Most participants rated domains as relevant (81%-95%) and clear (82%-93%). A total of 149 participants (n = 48 patients/caregivers, 101 clinicians/researchers) participated in virtual workshops and voted on the proposed core domain set which received endorsement by 95%. Endorsed domains are: 1-Knowledge of options, their potential benefits and harms; 2-Chosen option aligned with each patient's values and preferences; 3-Confidence in the chosen option; 4-Satisfaction with the decision-making process; 5-Adherence to the chosen option and 6-Potential negative consequences of the SDM intervention.Conclusion: We achieved consensus among an international group of stakeholders on the OMERACT core domain set for rheumatology trials of SDM interventions. Future research will develop the Core Outcome Measurement Set.Clinical significance: Prior to this study, there had been no consensus on the OMERACT core domain set for SDM interventions. The current study shows that the OMERACT core domain set achieved a high level of endorsement by key stakeholders, including patients/caregivers, clinicians and researchers.(c) 2021 Elsevier Inc. All rights reserved.

Objective.The Outcome Measures in Rheumatology (OMERACT) Shared Decision Making (SDM) Working Group aims to determine the core outcome domain set for measuring the effectiveness of SDM interventions in rheumatology trials.Methods.A white paper was developed to clarify the draft core domain set. It was then used to prepare for interviews to investigate reasons for lack of consensus on it and to suggest further improvements.Results.OMERACT scientists/clinicians (n = 13) and patients (n = 10) suggested limiting the core domain set to outcome domains, removing process domains, and clarifying remaining domains.Conclusion.A revised core domain set will undergo further consensus-building.

Nous avons examine la qualite des soins fournis aux personnes âgees fragiles dans cinq provinces canadiennes a partir de donnees administratives sur la sante. Dans chaque province, nous avons considere les personnes âgees fragiles en fonction de deux cohortes : les personnes decedees et les personnes vivantes. Des regles de decision ont ete utilisees pour determiner quelles personnes etaient freles, soit celles residant en etablissement de soins de longue duree, qui etaient en phase terminale ou dont le profil correspondait a deux des sept domaines identifies. Ces domaines etaient fondes sur des echelles de fragilite, des discussions avec des geriatres et des indicateurs d'utilisation des services de sante. Nous avons evalue la qualite des soins a l'aide des indicateurs de qualite suivants : diminution de la duree de l'hospitalisation, diminution du nombre de readmissions a l'hopital, diminution du nombre de visites a l'urgence, augmentation de la continuite des soins fournis par un medecin de famille, diminution de l'utilisation de la ventilation mecanique et diminution du nombre d'admissions aux soins intensifs. A l'aide d'analyses de regression, nous avons egalement constate que le sexe masculin et l'âge avance etaient associes a une moins bonne qualite de soins dans les deux cohortes. Cette etude fournit des donnees de base qui permettront d'evaluer les futurs efforts visant a ameliorer la qualite des soins offerts aux personnes âgees 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.

Background Despite health policy that promotes shared decision-making, it is not yet the norm in clinical practice. We aimed to assess how much shared decision-making Canadians experienced in health-related decisions in 2017. Methods We conducted a cross-sectional online survey in January 2018 with a Web-based panel of Canadians representing all 10 provinces. We assessed their involvement in health-related decisions made with a health care professional over the previous year by asking about 1) discussion of choice of treatment or care plan, 2) presentation of advantages and disadvantages, 3) exploration of ideas and preferences, 4) discussion of preferred option and 5) match between preferred and actual level of participation. We computed an average shared decision-making score (range 1 [never] to 5 [always]). We presented characteristics of participants and responses using descriptive statistics and explored variations across sociodemographic factors, jurisdictions, geographical areas and care settings (home care or not) using multivariate weighted regressions. Results Of the 1591 participants surveyed, 1010 (63.5%) reported receiving health care in the previous 12 months. The mean of the average shared decision-making score was 2.25/5 (standard deviation [SD] 1.16). After weighting, 42.8% of respondents reported that their health care professional often or always mentioned that they had a choice of treatment or care plan, 45.4% reported that advantages and disadvantages were often or always presented, 38.8% reported that they were often or always asked for their ideas or preferences, 40.2% reported that they were often or always asked about their preferred option, and 54.1% stated that their level of participation in decision-making often or always matched their preferred level of participation. Increasing age, rural setting, living in the province of Quebec and not being white significantly decreased the level of shared decision-making experienced. Older respondents (age ≥ 65 yr) receiving home care reported the least shared decision-making (mean score 1.7 [SD 0.5]). Interpretation Canadians in all 10 provinces experienced a low degree of shared decision-making in 2017, with variations across sociodemographic factors, jurisdictions, care settings and geographical areas. Further efforts to foster implementation of shared decision-making are needed and should take these variations into account.

Background Our team has developed a decision aid to help pregnant women and their partners make informed decisions about Down syndrome prenatal screening. However, the decision aid is not yet widely available in Quebec’s prenatal care pathways. Objective We sought to identify knowledge translation strategies and develop an implementation plan to promote the use of the decision aid in prenatal care services in Quebec, Canada. Methods Guided by the Knowledge-to-Action Framework and the Theoretical Domains Framework, we performed a synthesis of our research (11 publications) on prenatal screening in Quebec and on the decision aid. Two authors independently reviewed the 11 articles, extracted information, and mapped it onto the Knowledge-to-Action framework. Using participatory action research methods, we then recruited pregnant women, health professionals, managers of three prenatal care services, and researchers to (a) identify the different clinical pathways followed by pregnant women and (b) select knowledge translation strategies for a clinical implementation plan. Then, based on all the information gathered, the authors established a consensus on strategies to include in the plan. Results Our knowledge synthesis showed that pregnant women and their partners are not sufficiently involved in the decision-making process about prenatal screening and that there are numerous barriers and facilitators of the use of the decision aid in clinical practice (e.g., low intention to use it among health providers). Using a participatory action approach, we met with five pregnant women, three managers, and six health professionals. They informed us about three of Quebec’s prenatal care pathways and helped us identify 20 knowledge translation strategies (e.g., nurse discusses decision aid with women before they meet the doctor) to include in a clinical implementation plan. The research team reached a consensus about the clinical plan and also about broader organizational strategies, such as training healthcare providers in the use of the decision aid, monitoring its impact (e.g., measure decisional conflict) and sustaining its use (e.g., engage key stakeholders in the implementation process). Conclusion Next steps are to pilot our implementation plan while further identifying global strategies that target institutional, policy, and systemic supports for implementation.

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 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.

Background Family medicine is a branch of medicine that manages common and long-term illnesses in children and adults. Family physicians in particular play a major role and their scope of practice is expected to impact patient and population. However, little is known about its impact on physicians. We aimed to assess the effects of scope of practice on family physician outcomes. Methods We performed a systematic review that we reported using PRISMA guidelines. For the inclusion criteria, any study exploring an association between the scope of practice and physician outcomes was considered. Three bibliographic databases Medline, Embase, and ERIC were consulted through OVID interface from their respective inceptions to November, 2020. Two reviewers independently selected studies, extracted data and assessed the risk of bias of studies using appropriate tools. We conducted data synthesis using a narrative form. GRADE was used for evaluating quality of cumulative evidence. Results In total, we included 12 studies with 38,732 participants from 6927 citations identified. Eleven of them were cross-sectional, and one was a cohort study with acceptable methodological quality. We found that: 1) family physicians with diverse clinical and nonclinical activities significantly improve their job satisfaction (ppp Conclusions Our findings suggest that the scope of practice may be favorably associated with some family physician outcomes but with a very low level of evidence available. Based on these findings, healthcare system managers could monitor the scope of practice among family physicians and encourage future research in this field. Systematic review registration Our protocol was registered under the number CRD42019121990 in PROSPERO.

This scoping review summarizes findings from 23 qualitative articles on how social and built environments contribute to the well-being of people with dementia who live at home. Through thematic analysis, two themes were identified: i) connection to society and supportive relationships and ii) interaction with natural environments and public space. Features of the social and built environment contribute to well-being both positively and negatively. Future research should explore how these features intersect in an urban-rural context as a basis to inform the development of dementia-friendly initiatives. Moreover, involving people with dementia in the design of features of built environments, such as infrastructure, will result in more inclusive communities.

BackgroundWith more people with dementia living at home, neighborhoods and public spaces are being recognized as dementia care settings. Further, there is a shift from emphasizing the loss and decline of a person with dementia to a focus on strength and capacity. The aim of this paper is to identify assets that contribute to the well-being of people with memory problems and dementia living in a community context in the Netherlands.MethodsA deductive content analysis, based on the Asset-Based Community Development (ABCD) framework, was used to analyze qualitative data collected through walking interviews and in-depth interviews with eight participants. The participants included six women and two men and ranged from 59 to 93 years of age.FindingsWe identified an inventory of physical, social and institutional assets that contribute to participants’ well-being. These assets are divided into two categories that relate to well-being: a) assets to navigate public space, and b) assets to support social inclusion and encounters. We observed that it was not one isolated type of asset that contributed to well-being, but more a combination of different assets. Moreover, we found that participants used assets to gain a sense of relief, confidence and support their sense of belonging and inclusion.ConclusionThese findings inform an asset-based perspective of people living with memory problems and dementia that can promote engagement to support dementia-informed community development, public space design, and healthcare innovations to improve the well-being of people with a range of memory problems who live at home.

Background Little is known about engaging patients and stakeholders in the process of scaling up effective knowledge translation interventions targeting the general public. Using an integrated knowledge translation approach, we aimed to scale up and evaluate an effective pilot program of disseminating research results in public libraries. Methods We conducted a scaling-up study targeting the general public. Based on our successful pilot project, we co-developed and implemented a larger-scale program of free citizen workshops in public libraries, this time in close research partnership with stakeholders and patient representatives. Citizen workshops, each facilitated by one participating physician and one science communicator, consisted of a 45-min computer-assisted presentation and a 45-min open exchange. Additional scale-up costs included offering financial incentives to stakeholders involved and the purchase of audio-visual equipment. The intervention outcome was knowledge gained. Scale-up outcomes were satisfaction, appropriateness, coverage, time and costs. An evaluation questionnaire was used to collect data of interest. Both quantitative and qualitative analyses were performed. Results The workshop theme chosen by patient and stakeholder representatives was the high prevalence of medication overuse among people over 65 years of age. From April to May 2019, 26 workshops were given in 25 public libraries reaching 362 people. Eighteen participating physicians and six science communicators facilitated the workshops. Participants reported significant knowledge gain (mean difference 2.1, 95% CI 2.0–2.2, P

Background We developed a decision aid (DA) to help pregnant women and their partners make informed decisions about prenatal screening for trisomy. We aimed to determine its usefulness for preparing for decision-making and its acceptability among end-users. Methods In this mixed-methods pilot study, we recruited participants in three prenatal care settings in Quebec City. Eligible women were over 18 and more than 16 weeks pregnant or had given birth recently. We asked them about the usefulness of the DA using an interview grid based on the Technology Acceptance Model. We performed descriptive statistics and deductive analysis. Results Thirty-nine dyads or individuals participated in the study. Mean usefulness score was 86.2 ± 13. Most participants found the amount of information in the DA just right (79.5%), balanced (89.7%), and very useful (61.5%). They were less satisfied with the presentation and the values worksheet and suggested different values clarification methods. Conclusion Rigorous pilot tests of DAs with patients are an important stage in their development before the more formal assessments that precede scaling up the DA in clinical practice. Practice implications The next version of the DA will integrate the suggestions of end-users for better decision-making processes about prenatal screening for trisomy.

IntroductionShared decision making is an interpersonal process whereby healthcare providers collaborate with and support patients in decision-making. Older adults receiving home care need support with decision-making. We will explore what older adults receiving home care and their caregivers need for making better health-related decisions.Methods and analysisThis two-phase sequential exploratory mixed methods study will be conducted in a pan-Canadian healthcare organisation, SE Health. First, we will create a participant advisory group to advise us throughout the research process. In phase 1 (qualitative), we will recruit a convenience sample of 15–30 older adults and caregivers receiving home care to participate in open-ended semi-structured interviews. Phase 1 participants will be invited to share what health-related decisions they face at home and what they need for making better decisions. In phase 2 (quantitative), interdisciplinary health and social care providers will be invited to answer a web-based survey to share their views on the decisional needs of older adults and their caregivers. The survey will include questions informed by findings from qualitative interviews in phase 1, and a workbook for assessing decisional needs based on the Ottawa Decision Support Framework. Finally, qualitative and quantitative results will be triangulated (by methods, investigator, theory and source) to develop a comprehensive understanding of decision-making needs from the perspective of older adults, caregivers and health and social care providers. We will use the quality of mixed methods studies in health services research guidelines and the Checklist for Reporting the Results of Internet E-Surveys checklist.Ethics and disseminationEthics approval was obtained from the research ethics boards at Southlake Regional Health Centre and Université Laval. This study will inform the design of decision support interventions. Further dissemination plans include summary briefs for study participants, tailored reports for home care decision makers and policy makers, and peer-reviewed publications.Trial registration numberNCT04327830.

Background Pregnant women often find it difficult to choose from among the wide variety of available prenatal screening options. To help pregnant women and their partners make informed decisions based on their values, needs, and preferences, a decision aid and a web-based shared decision making (SDM) training program for health professionals have been developed. In Canada, nurses provide maternity care and thus can train as decision coaches for prenatal screening. However, there is a knowledge gap about the effectiveness of SDM interventions in maternity care in nursing practice. Objective This study aims to assess the impact of an SDM training program on nurses’ intentions to use a decision aid for prenatal screening and on their knowledge and to assess their overall impressions of the training. Methods This is a 2-arm parallel randomized trial. French-speaking nurses working with pregnant women in the province of Quebec were recruited online by a private survey firm. They were randomly allocated (1:1 ratio) to either an experimental group, which completed a web-based SDM training program that included prenatal screening, or a control group, which completed a web-based training program focusing on prenatal screening alone. The experimental intervention consisted of a 3-hour web-based training hosted on the Université Laval platform with 4 modules: (1) SDM; (2) Down syndrome prenatal screening; (3) decision aids; and (4) communication between health care professionals and the patient. For the control group, the topic of SDM in Module 1 was replaced with “Context and history of prenatal screening,” and the topic of decision aids in Module 3 was replaced with “Consent in prenatal screening.” Participants completed a self-administered sociodemographic questionnaire with close-ended questions. We also assessed the participants' (1) intention to use a decision aid in prenatal screening clinical practice, (2) knowledge, (3) satisfaction with the training, (4) acceptability, and (5) perceived usefulness of the training. The randomization was done using a predetermined sequence and included 40 nurses. Participants and researchers were blinded. Intention to use a decision aid will be assessed by a t test. Bivariate and multivariate analysis will be performed to assess knowledge and overall impressions of the training. Results This study was funded in 2017 and approved by Genome Canada. Data were collected from September 2019 to late January 2020. This paper was initially submitted before data analysis began. Results are expected to be published in winter 2020. Conclusions Study results will inform us on the impact of an SDM training program on nurses’ intention to use and knowledge of decision aids for prenatal screening and their overall impressions of the training. Participant feedback will also inform an upgrade of the program, if needed. Trial Registration ClinicalTrials.gov NCT04162288; https://clinicaltrials.gov/ct2/show/NCT04162288 International Registered Report Identifier (IRRID) DERR1-10.2196/17878

Background: The scale-up of evidence-based innovations is required to reduce waste and inequities in health and social services (HSS). However, it often tends to be a top-down process initiated by policy-makers, and the values of the intended beneficiaries are forgotten. Involving multiple stakeholders including patients and the public in the scaling-up process is thus essential but highly complex. We propose to identify relevant strategies for meaningfully and equitably involving patients and the public in the science and practice of scaling up in HSS.Methods: Design: We will adapt our overall method from the RAND Appropriateness Method. Following this, we will perform a two-component study design (knowledge synthesis and Delphi study) grounded in an integrated knowledge translation (iKT) approach. This approach involves extensive participation of a network of stakeholders interested in patient and public involvement (PPI) in scaling up and a multidisciplinary steering committee. Knowledge synthesis: We will conduct a systematic scoping review following the methodology recommended in the Joanna Briggs Institute Reviewers Manual. We will use the following eligibility criteria: 1) Participants - any stakeholder involved in creating or testing a strategy for PPI; 2) Intervention - any PPI strategy proposed for scaling-up initiatives; 3) Comparator - no restriction; 4) Outcomes: any process or outcome metrics related to PPI; and 5) Setting - HSS. We will search electronic databases (e.g., MEDLINE, Sociological Abstract), hand searching relevant websites, screen the reference lists of included records, and consult experts in the field. Two reviewers will independently select and extract eligible studies. We will summarize data quantitatively and qualitatively and report results using the PRISMA extension guidelines. Delphi study: We will conduct an online Delphi survey to achieve consensus on the relevant strategies for PPI in scaling-up initiatives in HSS. Participants will include stakeholders from low-, middle-, and high-income countries. We anticipate that three rounds will allow an acceptable degree of agreement on research priorities.Discussion: Our findings will advance understanding of how to meaningfully and equitably involve patients and the public in scaling-up initiatives for sustainable HSS.Registration: We registered this protocol with the Open Science Framework on August 19, 2020 (https://osf.io/zqpx7/).

Background There is little information about the functions and behavior change techniques (BCTs) needed to implement shared decision making (SDM) in clinical practice. To guide future implementation initiatives, we sought to develop a BCT taxonomy for SDM implementation interventions. Methods This study is a secondary analysis of a 2018 Cochrane review on interventions for increasing the use of shared decision making by healthcare professionals. We examined all 87 studies included in the review. We extracted relevant information on each study intervention into a spreadsheet. Coders had undergone a training workshop on intervention functions and online training on BCT Taxonomy version 1 (BCTTv1). We performed functions and BCTs coding trials, and identified coding rules. We used Michie’s guide for designing behavior change interventions to code the functions and BCTs used in the interventions. Coders met to compare coding and discrepancies were discussed until consensus was reached. Data was analyzed using simple descriptive statistics. Results Overall, 7 functions, 24 combinations of functions and 32 BCTs were used in the 87 SDM implementation interventions. The mean of functions per intervention was 2.5 and the mean of BCTs per intervention was 3.7. The functions Coercion and Restriction were not found. The most common function was Education (73 studies). Three combinations of functions were most common (e.g: Education + Persuasion, used in 10 studies). The functions associated with more effective SDM implementation interventions were Modeling and Training. The most effective combination of functions was Education + Training + Modeling + Enablement. The most commonly used BCT was Instruction on how to perform the behavior (43 studies). BCTs associated with more effective SDM implementation interventions were: Instruction on how to perform the behavior, Demonstration of the behavior, Feedback on behavior, Pharmacological support, Material reward, and Biofeedback. Twenty-five BCTs were associated with less effective SDM implementation interventions. Four new BCTs were identified: General information to support the behavior, Tailoring, Exercises to conceptually prepare for the behavior, and Experience sharing and learning. Conclusions We established a BCT taxonomy specific to the field of SDM to guide future SDM implementation interventions. Four new BCTs should be added to BCTTv1.

BackgroundShared 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.MethodsIn 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.ResultsOf 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).ConclusionsThe 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.

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.

Background The literature on the implementation of knowledge products is extensive. However, this literature is still difficult to interpret for policymakers and other stakeholders when faced with choosing implementation strategies likely to bring about successful change in their health systems. This work has the particularity to examine the scope of this literature, and to clarify the effectiveness of implementation strategies for different knowledge products. Consequently, we aim to (1) determine the strengths and weaknesses of existing literature overviews; (2) produce a detailed portrait of the literature on implementation strategies for various knowledge products; and (3) assess the effectiveness of implementation strategies for each knowledge product identified and classify them. Methods We will use a three-phase approach consisting of a critical analysis of existing literature overviews, a systematic review of systematic reviews, and a series of systematic reviews and meta-analyses. We will follow the Cochrane Methodology for each of the three phases. Our eligibility criteria are defined following a PICOS approach: Population, individuals or stakeholders participating in healthcare delivery, specifically, healthcare providers, caregivers, and end users; Intervention, any type of strategy aiming to implement a knowledge product including, but not limited to, a decision support tool, a clinical practice guideline, a policy brief, or a decision-making tool, a one-pager, or a health intervention; Comparison, any comparator will be considered; Outcomes, phases 1 and 2—any outcome related to implementation strategies including, but not limited to, the measures of adherence/fidelity to the use of knowledge products, their acceptability, adoption, appropriateness, feasibility, adaptability, implementation costs, penetration/reach and sustainability; phase 3—any additional outcome related to patients (psychosocial, health behavioral, and clinical outcomes) or healthcare professionals (behavioral and performance outcomes); Setting, primary healthcare has to be covered. We will search MEDLINE (Ovid), EMBASE, Web of Science, PsycINFO, CINAHL, and the Cochrane Library from their inception onwards. For each phase, two reviewers will independently perform the selection of studies, data extraction, and assess their methodological quality. We will analyze extracted data, and perform narrative syntheses, and meta-analyses when possible. Discussion Our results could inform not only the overviews’ methodology but also the development of an online platform for the implementation strategies of knowledge products. This platform could be useful for stakeholders in implementation science. Systematic review registration Protocol registered on Open Science Framework, https://osf.io/eb8w2/.

In this study, we identify existing interactive knowledge translation tools that could help patients and health-care professionals to prevent diabetes complications in the Canadian context. We conducted an environmental scan in collaboration with researchers and 4 patient partners across Canada. We conducted searches among the research team members, their networks and Twitter, and through searches in databases and Google. To be included, interactive knowledge translation tools had to meet the following criteria: used to prevent diabetes complications; used in a real-life setting; used any instructional method or material; had relevance in the Canadian context, written in English or French; developed and/or published by experts in diabetes complications or by a recognized organization; created in 2013 or after; and accessibility online or on paper. Two reviewers independently screened each record for selection and extracted the following data: authorship, objective(s), patients' characteristics, type of diabetes complications targeted, type of knowledge users targeted and tool characteristics. We used simple descriptive statistics to summarize our results. Thirty-one of the 1,700 potentially eligible interactive knowledge translation tools were included in the scan. Tool formats included personal notebook, interactive case study, risk assessment tool, clinical pathway, decision support tool, knowledge quiz and checklist. Diabetes complications targeted by the tools included foot-related neuropathy, cardiovascular diseases, mental disorders and distress and any complications related to diabetes and kidney disease. Our results inform Canadian stakeholders interested in the prevention of diabetes complications to avoid unnecessary duplication, identify gaps in knowledge and support implementation of these tools in clinical and patients' decision-making.

BackgroundShared decision making (SDM) in healthcare is an approach in which health professionals support patients in making decisions based on best evidence and their values and preferences. Considering sex and gender in SDM research is necessary to produce precisely-targeted interventions, improve evidence quality and redress health inequities. A first step is correct use of terms. We therefore assessed sex and gender terminology in SDM intervention studies.Materials and methodsWe performed a secondary analysis of a Cochrane review of SDM interventions. We extracted study characteristics and their use of sex, gender or related terms (mention; number of categories). We assessed correct use of sex and gender terms using three criteria: "non-binary use", "use of appropriate categories" and "non-interchangeable use of sex and gender". We computed the proportion of studies that met all, any or no criteria, and explored associations between criteria met and study characteristics.ResultsOf 87 included studies, 58 (66.7%) mentioned sex and/or gender. The most mentioned related terms were "female" (60.9%) and "male" (59.8%). Of the 58 studies, authors used sex and gender as binary variables respectively in 36 (62%) and in 34 (58.6%) studies. No study met the criterion "non-binary use". Authors used appropriate categories to describe sex and gender respectively in 28 (48.3%) and in 8 (13.8%) studies. Of the 83 (95.4%) studies in which sex and/or gender, and/or related terms were mentioned, authors used sex and gender non-interchangeably in 16 (19.3%). No study met all three criteria. Criteria met did not vary according to study characteristics (p>.05).ConclusionsIn SDM implementation studies, sex and gender terms and concepts are in a state of confusion. Our results suggest the urgency of adopting a standardized use of sex and gender terms and concepts before these considerations can be properly integrated into implementation research.

Background Emergency departments (EDs) in rural and remote areas face challenges in delivering accessible, high quality and efficient services. The objective of this pilot study was to test the feasibility and relevance of the selected approach and to explore challenges and solutions to improve delivery of care in selected EDs. Methods We conducted an exploratory multiple case study in two rural EDs in Québec, Canada. A survey filled out by the head nurse for each ED provided a descriptive statistical portrait. Semi-structured interviews were conducted with ED health professionals, decision-makers and citizens (n = 68) and analyzed inductively and thematically. Results The two EDs differed with regards to number of annual visits, inter-facility transfers and wait time. Stakeholders stressed the influence of context on ED challenges and solutions, related to: 1) governance and management (e.g. lack of representation, poor efficiency, ill-adapted standards); 2) health services organization (e.g. limited access to primary healthcare and long-term care, challenges with transfers); 3) resources (e.g. lack of infrastructure, limited access to specialists, difficult staff recruitment/retention); 4) and professional practice (e.g. isolation, large scope, maintaining competencies with low case volumes, need for continuing education, teamwork and protocols). There was a general agreement between stakeholder groups. Conclusions Our findings show the feasibility and relevance of mobilizing stakeholders to identify context-specific challenges and solutions. It confirms the importance of undertaking a larger study to improve the delivery of care in rural EDs.

Objectives Multimorbidity increases care needs and primary care use among people with chronic diseases. The Concerto Health Program (CHP) has been developed to optimise chronic disease management in primary care services. However, in its current version, the CHP primarily targets clinicians and does not aim to answer directly the needs of individual patients and their informal caregivers. This study aims to develop, implement and evaluate a user-centered, multifunctional and personalised eHealth platform (CONCERTO+) to promote a more active patient role in chronic disease management and decision-making. Method This ongoing project uses a collaborative research approach and has 3 major phases: 1) the development of a multi-module eHealth platform combining scientific evidence and user-centered design; 2) a feasibility study of the CONCERTO+ solution through a pilot cluster randomised controlled trial where patients with multiple chronic diseases from a primary healthcare practice will receive CONCERTO+ during 6 months and be compared to patients from a control practice receiving usual care; and 3) an analysis of CONCERTO+ potential for scaling up. Results The first phase of the project was the development of the user-centered solution. A first prototype was developed in Fall 2018 and tested with 10 patients and caregivers. Their comments led us to develop a second prototype that was tested with 10 patients and caregivers in Spring 2019. Following these 2 iterations, a final version of CONCERTO+ was developed and integrated to a large eHealth portal that enables information exchange and communication between health care providers and patients. The next phase, which consists of a pilot trial with diabetic patients followed in primary care practices, is ongoing. Conclusions Digital health solutions such as patient portals have been found to improve self-management for chronic care conditions. By fostering a more active role of patients, it is hypothesised that a solution like CONCERTO+ could optimise the use of health care services and decrease emergency visits.

Consideration of sex and gender in research and clinical practice is necessary to redress health inequities and reduce knowledge gaps. As all health professionals must maintain and update their skills throughout their career, developing innovative continuing professional education programs that integrate sex and gender issues holds great promise for reducing these gaps. This article proposes new approaches to partnership, team development, pedagogical theory, content development, evaluation and data management that will advance the integration of sex and gender in continuing professional development (CPD). Our perspectives build on an intersectoral and interprofessional research team that includes several perspectives, including those of CPD, health systems, knowledge translation and sex and gender.

Background Health research is conducted with the expectation that it advances knowledge and eventually translates into improved health systems and population health. However, research findings are often caught in the know-do gap: they are not acted upon in a timely way or not applied at all. Integrated knowledge translation (IKT) is advanced as a way to increase the relevance, applicability and impact of research. With IKT, knowledge users work with researchers throughout the research process, starting with identification of the research question. Knowledge users represent those who would be able to use research results to inform their decisions (e.g. clinicians, managers, policy makers, patients/families and others). Stakeholders are increasingly interested in the idea that IKT generates greater and faster societal impact. Stakeholders are all those who are interested in the use of research results but may not necessarily use them for their own decision-making (e.g. governments, funders, researchers, health system managers and policy makers, patients and clinicians). Although IKT is broadly accepted, the actual research supporting it is limited and there is uncertainty about how best to conduct and support IKT. This paper presents a protocol for a programme of research testing the assumption that engaging the users of research in phases of its production leads to (a) greater appreciation of and capacity to use research; (b) the production of more relevant, useful and applicable research that results in greater impact; and (c) conditions under which it is more likely that research results will influence policy, managerial and clinical decision-making. Methods The research programme will adopt an interdisciplinary, international, cross-sector approach, using multiple and mixed methods to reflect the complex and social nature of research partnerships. We will use ongoing and future natural IKT experiments as multiple cases to study IKT in depth, and we will take advantage of the team’s existing relationships with provincial, national and international organizations. Case studies will be retrospective and prospective, and the 7-year grant period will enable longitudinal studies. The initiation of partnerships, funding processes, the research lifecycle and then outcomes/impacts post project will be studied in real time. These living laboratories will also allow testing of strategies to improve the efficiency and effectiveness of the IKT approach. Discussion This is the first interdisciplinary, systematic and programmatic research study on IKT. The research will provide scientific evidence on how to reliably and validly measure collaborative research partnerships and their impacts. The proposed research will build the science base for IKT, assess its relationship with research use and identify best practices and appropriate conditions for conducting IKT to achieve the greatest impact. It will also train and mentor the next generation of IKT researchers.

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.

Considering the growing recognition of the importance of patient engagement in healthcare decisions, research and delivery systems, it is important to ensure high quality and efficient patient engagement evaluation tools. In this commentary, we will first highlight the definition and importance of patient engagement. Then we discuss the psychometric properties of the patient engagement evaluation tools identified in a recent review on patient engagement in healthcare organization- and system-level decision-making. Lastly, we suggest future directions for patient engagement and its evaluation tools.

Background Research on the integration of artificial intelligence (AI) into community-based primary health care (CBPHC) has highlighted several advantages and disadvantages in practice regarding, for example, facilitating diagnosis and disease management, as well as doubts concerning the unintended harmful effects of this integration. However, there is a lack of evidence about a comprehensive knowledge synthesis that could shed light on AI systems tested or implemented in CBPHC. Objective We intended to identify and evaluate published studies that have tested or implemented AI in CBPHC settings. Methods We conducted a systematic scoping review informed by an earlier study and the Joanna Briggs Institute (JBI) scoping review framework and reported the findings according to PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analysis-Scoping Reviews) reporting guidelines. An information specialist performed a comprehensive search from the date of inception until February 2020, in seven bibliographic databases: Cochrane Library, MEDLINE, EMBASE, Web of Science, Cumulative Index to Nursing and Allied Health Literature (CINAHL), ScienceDirect, and IEEE Xplore. The selected studies considered all populations who provide and receive care in CBPHC settings, AI interventions that had been implemented, tested, or both, and assessed outcomes related to patients, health care providers, or CBPHC systems. Risk of bias was assessed using the Prediction Model Risk of Bias Assessment Tool (PROBAST). Two authors independently screened the titles and abstracts of the identified records, read the selected full texts, and extracted data from the included studies using a validated extraction form. Disagreements were resolved by consensus, and if this was not possible, the opinion of a third reviewer was sought. A third reviewer also validated all the extracted data. Results We retrieved 22,113 documents. After the removal of duplicates, 16,870 documents were screened, and 90 peer-reviewed publications met our inclusion criteria. Machine learning (ML) (41/90, 45%), natural language processing (NLP) (24/90, 27%), and expert systems (17/90, 19%) were the most commonly studied AI interventions. These were primarily implemented for diagnosis, detection, or surveillance purposes. Neural networks (ie, convolutional neural networks and abductive networks) demonstrated the highest accuracy, considering the given database for the given clinical task. The risk of bias in diagnosis or prognosis studies was the lowest in the participant category (4/49, 4%) and the highest in the outcome category (22/49, 45%). Conclusions We observed variabilities in reporting the participants, types of AI methods, analyses, and outcomes, and highlighted the large gap in the effective development and implementation of AI in CBPHC. Further studies are needed to efficiently guide the development and implementation of AI interventions in CBPHC settings.

To improve the care of seniors living with dementia, current initiatives typically target better identification and treatment of the patient. Our recent survey, however, shows we should also focus more on the needs of the informal caregivers who care for this population in primary care settings. This three-round Delphi survey sought caregivers’ views on the most frequent and difficult decisions that seniors with dementia, their informal caregivers, and health care providers face in primary care settings in the province of Quebec. Respondents consisted of 31 health care professionals, informal caregivers, managers, representatives of community-based organizations devoted to these seniors, and clinical researchers involved in the organization of care or services to seniors with dementia. When we asked respondents to rank 27 common but difficult decisions involving benefit/harm trade-offs, 83% ranked the decision to choose an option to reduce the burden of informal caregivers as one of the five most important decisions. Choosing a treatment to manage agitation, aggression or psychotic symptoms followed closely, with 79% of respondents selecting it as one of the five most important decisions. Our results point to the importance of attending to the needs of informal caregivers and improving the management of behavioural and psychological symptoms of dementia.

Background Timely access in primary health care is one of the key issues facing health systems. Among many interventions developed around the world, advanced access is the most highly recommended intervention designed specifically to improve timely access in primary care settings. Based on greater accessibility linked with patients’ relational continuity and informational continuity with a primary care professional or team, this organizational model aims to ensure that patients obtain access to healthcare services at a time and date convenient for them when needed regardless of urgency of demand. Its implementation requires a major organizational change based on reorganizing the practices of all the administrative staff and health professionals. In recent years, advanced access has largely been implemented in primary care organizations. However, despite its wide dissemination, we observe considerable variation in the implementation of the five guiding principles of this model across organizations, as well as among professionals working within the same organization. The main objective of this study is to assess the variation in the implementation of the five guiding principles of advanced access in teaching primary healthcare clinics across Quebec and to better understand the influence of the contextual factors on this variation and on outcomes. Methods This study will be based on an explanatory sequential design that includes 1) a quantitative survey conducted in 47 teaching primary healthcare clinics, and 2) a multiple case study using mixed data, contrasted cases (n = 4), representing various implementation profiles and geographical contexts. For each case, semi-structured interviews and focus group will be conducted with professionals and patients. Impact analyses will also be conducted in the four selected clinics using data retrieved from the electronic medical records. Discussion This study is important in social and political context marked by accessibility issues to primary care services. This research is highly relevant in a context of massive media coverage on timely access to primary healthcare and a large-scale implementation of advanced access across Quebec. This study will likely generate useful lessons and support evidence-based practices to refine and adapt the advanced access model to ensure successful implementation in various clinical contexts facing different challenges.

Policy-makers worldwide are increasingly interested in scaling up evidence-based interventions (EBIs) to larger populations, and implementation scientists are developing frameworks and methodologies for achieving this. But scaling-up does not always produce the desired results. Why not? We aimed to enhance awareness of the various pitfalls to be anticipated when planning scale-up. In lower- and middle-income countries (LMICs), the scale-up of health programs to prevent or respond to outbreaks of communicable diseases has been occurring for many decades. In high-income countries, there is new interest in the scaling up of interventions that address communicable and non-communicable diseases alike. We scanned the literature worldwide on problems encountered when implementing scale-up plans revealed a number of potential pitfalls that we discuss in this paper. We identified and discussed the following six major pitfalls of scaling-up EBIs: 1) the cost-effectiveness estimation pitfall, i.e. accurate cost-effectiveness estimates about real-world implementation are almost impossible, making predictions of economies of scale unreliable; 2) the health inequities pitfall, i.e. some people will necessarily be left out and therefore not benefit from the scaled-up EBIs; 3) the scaled-up harm pitfall, i.e. the harms as well as the benefits may be amplified by the scaling-up; 4) the ethical pitfall, i.e. informed consent may be a challenge on a grander scale; 5) the top-down pitfall, i.e. the needs, preferences and culture of end-users may be forgotten when scale-up is directed from above; and 6) the contextual pitfall, i.e. it may not be possible to adapt the EBIs to every context. If its pitfalls are addressed head on, scaling-up may be a powerful process for translating research data into practical improvements in healthcare in both LMICs and high-income countries, ensuring that more people benefit from EBIs.

Introduction: For many patients, primary care is an appropriate setting for advance care planning (ACP). ACP focuses on what matters most to patients and ensuring health care supports patient-defined goals. ACP may involve interactions between a clinician and a patient, but for seriously ill patients ACP could be managed by a team. Methods: We are conducting a cluster randomized trial comparing team-based to clinician-focused ACP using the Serious Illness Care Program (SICP) in 42 practices recruited from 7 practice-based research networks (PBRNs). Practices were randomized to one of the two models. Patients are referred to the study after engaging in ACP in primary care. Our target enrollment is 1260 subjects. Patient data are collected at enrollment, six months and one year. Primary outcomes are patient-reported goal-concordant care and days at home. Secondary outcomes include additional patient measures, clinician/team experience, and practice-level measures of SICP implementation. Study Implementation: This trial was designed and is conducted by the Meta-network Learning and Research Center (Meta-LARC), a consortium of PBRNs focused on integrating engagement with patients, families, and other stakeholders into primary care research and practice. The trial pairs a comparative effectiveness study with implementation of a new program and is designed to balance fidelity to the assigned model with flexibility to allow each practice to adapt implementation to their environment and priorities. Our dissemination will report the results of comparing the two models and the implementation experience of the practices to create guidance for the spread of ACP in primary care.

Introduction: Emergency departments (EDs) in rural and remote areas face well-known challenges, calling for organizational innovations tailored to their context. The main objective of this study was to pilot the methodology to be used in a large-scale province-wide project that aims to mobilize multiple stakeholders to find applicable solutions to improve rural emergency care [1]. Methods: Based on a case study approach, research was carried out in a convenience sample of two rural EDs selected on the basis of contrasting characteristics (geography, population and resource available). Information on EDs (visits, staff, resources, etc.) were collected with a questionnaire. Data were the object of descriptive statistics. Qualitative data were collected via semi-directed interviews and analyzed using the thematic analysis method, with NVivo software. Results: Statistical portrait highlights similarities (case types, team size, and emergency size) and differences (wait times, consultation volumes, specialities available and number of transfers) between the two EDs. EDs receive annually between 12 940 and 21 284 visits. Ten percent of them are of high acuity. One ED had no local access to CT scan and intensive care unit. A total of 68 participants, including patients, citizens, decision makers and healthcare professionals, took part in individual interviews (33) and focus groups (9) that aim to identify unique challenges and opportunities for the two EDs. Qualitative data highlighted the importance of the context to understand rural EDs. The importance of EDs as a safety net for the population and as a tool for regional development was also mentioned. Four main themes emerged from our analysis in regards to challenges and solutions: 1) local and regional management; 2) health services organization; 3) access to technical and human resources; 4) professional practice (training, recruitment, retention). Discussions: Challenges and solutions identified vary in accordance with the distinctiveness of each ED, supporting the notion that “one size will not fit all.” Conclusions: This pilot project gave us an opportunity to validate the relevance and feasibility of mobilizing a large and diverse group of local stakeholders and using a qualitative approach to identify problems and solutions typical of rural EDs. Lessons learned: The originality of our results lies in the way the general recommendations were anchored in the reality of the two EDs studied. The combination of data offers a unique perspective on rural EDs. Limitation: By the nature of this pilot study, we did not reach data saturation for the qualitative phase of the study. The scope of data collected does, however, offer a solid foundation for the wider project. Suggestions for future research: This pilot project lays the cornerstone for a larger project that goes well beyond a qualitative approach and statistical portrait of rural EDs. The Rural Emergency 360° study aims to mobilize the rural emergency community and support it to take ownership of the results. References: 1- Fleet R et al. Rural emergency care 360°: mobilising healthcare professionals, decision-makers, patients and citizens to improve rural emergency care in the province of Quebec, Canada: a qualitative study protocol. BMJ open. 2017 Aug 1;7(8).

The Internet has become the first source of consumer health information. Most theoretical and empirical studies are centered on information needs and seeking, rather than on information outcomes. This review's purpose is to explore and explain health outcomes of Online Consumer Health Information (OCHI) in primary care. A participatory systematic mixed studies review with a framework synthesis was undertaken. Starting from an initial conceptual framework, our specific objectives were to (a) identify types of OCHI outcomes in primary care, (b) identify factors associated with these outcomes, and (c) integrate these factors and outcomes into a comprehensive revised framework combining an information theory and a psychosocial theory of behavior. The results of 65 included studies were synthesized using a qualitative thematic data analysis. The themes derived from the literature underwent a harmonization process that produced a comprehensive typology of OCHI outcomes. The revised conceptual framework specifies four individual and one organizational level of OCHI outcomes, while including factors such as consumers' information needs and four interdependent contextual factors. It contributes to theoretical knowledge about OCHI health outcomes, and informs future research, information assessment methods, and tools to help consumers find and use health information.

ObjectivesAs Canada’s second largest province, the geography of Quebec poses unique challenges for trauma management. Our primary objective was to compare mortality rates between trauma patients treated at rural emergency departments (EDs) and urban trauma centres in Quebec. As a secondary objective, we compared the availability of trauma care resources and services between these two settings.DesignRetrospective cohort study.Setting26 rural EDs and 33 level 1 and 2 urban trauma centres in Quebec, Canada.Participants79 957 trauma cases collected from Quebec’s trauma registry.Primary and secondary outcome measuresOur primary outcome measure was mortality (prehospital, ED, in-hospital). Secondary outcome measures were the availability of trauma-related services and staff specialties at rural and urban facilities. Multivariable generalised linear mixed models were used to determine the relationship between the primary facility and mortality.ResultsOverall, 7215 (9.0%) trauma patients were treated in a rural ED and 72 742 (91.0%) received treatment at an urban centre. Mortality rates were higher in rural EDs compared with urban trauma centres (13.3% vs 7.9%, pConclusionsTrauma patients treated in rural EDs had a higher mortality rate and were more likely to die prehospital or in the ED compared with patients treated at an urban trauma centre. Our results were limited by a lack of accurate prehospital times in the trauma registry.

Design and objectivesWe performed a systematic review of studies evaluating healthcare provider (HCP) trainings in shared decision-making (SDM) to analyse their evaluation strategies.Setting and participantsHCP trainings in SDM from all healthcare settings.MethodsWe searched scientific databases (Medline, PsycInfo, CINAHL), performed reference and citation tracking, contacted experts in the field and scanned the Canadian inventory of SDM training programmes for healthcare professionals. We included articles reporting data of summative evaluations of HCP trainings in SDM. Two reviewers screened records, assessed full-text articles, performed data extraction and assessed study quality with the integrated quality criteria for review of multiple study designs (ICROMS) tool. Analysis of evaluation strategies included data source use, use of unpublished or published measures and coverage of Kirkpatrick’s evaluation levels. An evaluation framework based on Kirkpatrick’s evaluation levels and the Quadruple Aim framework was used to categorise identified evaluation outcomes.ResultsOut of 7234 records, we included 41 articles reporting on 30 studies: cluster-randomised (n=8) and randomised (n=9) controlled trials, controlled (n=1) and non-controlled (n=7) before-after studies, mixed-methods (n=1), qualitative (n=1) and post-test (n=3) studies. Most studies were conducted in the USA (n=9), Germany (n=8) or Canada (n=7) and evaluated physician trainings (n=25). Eleven articles met ICROMS quality criteria. Almost all studies (n=27) employed HCP-reported outcomes for training evaluation and most (n=19) additionally used patient-reported (n=12), observer-rated (n=10), standardised patient-reported (n=2) outcomes or training process and healthcare data (n=10). Most studies employed a mix of unpublished and published measures (n=17) and covered two (n=12) or three (n=10) Kirkpatrick’s levels. Identified evaluation outcomes covered all categories of the proposed framework.ConclusionsStrategies to evaluate HCP trainings in SDM varied largely. The proposed evaluation framework maybe useful to structure future evaluation studies, but international agreement on a core set of outcomes is needed to improve evidence.PROSPERO registration numberCRD42016041623.

BackgroundDecisions 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.ObjectiveIn 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.MethodsIn 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.ResultsRecruitment for phase 1 will begin in 2019. We expect results to be available in 2021.ConclusionsThis 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

PURPOSE Case management (CM) interventions are effective for frequent users of health care services, but little is known about which intervention characteristics lead to positive outcomes. We sought to identify characteristics of CM that yield positive outcomes among frequent users with chronic disease in primary care. METHODS For this systematic review of both quantitative and qualitative studies, we searched MEDLINE, CINAHL, Embase, and PsycINFO (1996 to September 2017) and included articles meeting the following criteria: (1)population: adult frequent users with chronic disease, (2)intervention: CM in a primary care setting with a postintervention evaluation, and (3)primary outcomes: integration of services, health care system use, cost, and patient outcome measures. Independent reviewers screened abstracts, read full texts, appraised methodologic quality (Mixed Methods Appraisal Tool), and extracted data from the included studies. Sufficient and necessary CM intervention characteristics were identified using configurational comparative methods. RESULTS Of the 10,687 records retrieved, 20 studies were included; 17 quantitative, 2 qualitative, and 1 mixed methods study. Analyses revealed that it is necessary to identify patients most likely to benefit from a CM intervention for CM to produce positive outcomes. High-intensity intervention or the presence of a multidisciplinary/interorganizational care plan was also associated with positive outcomes. CONCLUSIONS Policy makers and clinicians should focus on their case-finding processes because this is the essential characteristic of CM effectiveness. In addition, value should be placed on high-intensity CM interventions and developing care plans with multiple types of care providers to help improve patient outcomes.

BackgroundUnderstanding the mobility patterns and experiences of older adults with memory problems living at home has the potential to improve autonomy and inform shared decision making (SDM) about their housing options.ObjectiveWe aim to (1) assess the mobility patterns and experiences of older adults with memory problems, (2) co-design an electronic decision support intervention (e-DSI) that integrates users’ mobility patterns and experiences, (3) explore their intention to use an e-DSI to support autonomy at home, and (4) inform future SDM processes about housing options.MethodsInformed by the Good Reporting of A Mixed Methods Study (GRAMMS) reporting guidelines, we will conduct a 3-year, multipronged mixed methods study in Canada, Sweden, and the Netherlands. For Phase 1, we will recruit a convenience sample of 20 older adults living at home with memory problems from clinical and community settings in each country, for a total of 60 participants. We will ask participants to record their mobility patterns outside their home for 14 days using a GPS tracker and a travel diary; in addition, we will conduct a walking interview and a final debrief interview after 14 days. For Phase 2, referring to results from the first phase, we will conduct one user-centered co-design process per country with older adults with memory issues, caregivers, health care professionals, and information technology representatives informed by the Double Diamond method. We will ask participants how personalized information about mobility patterns and experiences could be added to an existing e-DSI and how this information could inform SDM about housing options. For Phase 3, using online web-based surveys, we will invite 210 older adults with memory problems and/or their caregivers, split equally across the three countries, to use the e-DSI and provide feedback on its strengths and limitations. Finally, in Phase 4, we will triangulate and compare data from all phases and countries to inform a stakeholder meeting where an action plan will be developed.ResultsThe study opened for recruitment in the Netherlands in November 2018 and in Canada and Sweden in December 2019. Data collection will be completed by April 2021.ConclusionsThis project will explore how e-DSIs can integrate the mobility patterns and mobility experiences of older adults with memory problems in three countries, improve older adults’ autonomy, and, ultimately, inform SDM about housing options.Trial RegistrationClinicalTrials.gov NCT04267484; https://clinicaltrials.gov/ct2/show/NCT04267484International Registered Report Identifier (IRRID)DERR1-10.2196/19244

The participation of patients in making decisions about their care is especially important towards the end of life because palliative care decisions involve extensive uncertainty and are heavily influenced by personal values. Yet, there is a scarcity of studies directly observing clinical interactions between palliative patients and their health care providers. In this study, we aimed to understand how patient participation in palliative care decisions is constructed through discourse in a community hospital-based palliative care team. This qualitative study combined ethnographic observations of a palliative care team with discourse analysis. Eighteen palliative care patients with cancer diagnoses, six family physicians, and two nurses were involved in the study. Multiple interactions were observed between each patient and health care providers over the course of 1 year, for a total of 101 consultations, 24 of which were audio-recorded. The analysis consisted in looking for the interpretive repertoires (i.e., familiar lines of argument used to justify actions) that were used to justify patient participation in decision-making during clinical interactions, as well as exploring their implications for decision roles and end-of-life care. Patients and their health care providers seldom addressed their decision-making roles explicitly. Rather, they constructed patient participation in palliative care decisions in a covert manner. Four interpretive repertoires were used to justify patient participation: (1) exposing uncertainty, (2) co-constructing patient preferences, (3) affirming patient autonomy, and finally (4) upholding the authority of health care providers. The results demonstrate how patients and health care providers used these arguments to negotiate their respective roles in decision-making. In conclusion, patients and health care providers used a variety of interpretive repertoires to covertly negotiate their roles in decision-making, and to legitimize decisions that shaped patients’ dying trajectories. Discourse analysis encourages awareness of the role of language in either promoting or hindering patient participation in decision-making. Key words: Palliative care, decision-making, patient participation, qualitative research, discourse analysis (Published: 22 November 2016) Citation: Int J Qualitative Stud Health Well-being 2016, 11: 32438 - http://dx.doi.org/10.3402/qhw.v11.32438

Patient decision aids (PDAs) are used in shared decision making to improve practitioner-patient communication and help patients decide about treatment options. To develop a PDA for adults with asthma considering inhaled corticosteroids, with or without long-acting beta2-agonists, to optimize asthma control.The PDA was developed based on the International Patient Decision Aid Standards. Step 1: PDA was drafted. Step 2: PDA acceptability was assessed among target users, certified asthma educators (CAEs) and adults with asthma, following an iterative process. a) Participants read the PDA, b) rated its presentation, length, balance, and perceived usefulness, indicated what they liked/disliked about it, and made suggestions for improvement. c) Based on results from (b), PDA was refined. This process was repeated with new participants until no suggestions were made. Step 3: The PDA was field tested with target users. Interviews with CAEs were conducted to identify areas of improvement. Step 4: Final PDA version was written.A color-printed, 4-page, letter-sized PDA was drafted. Acceptability testing involved 11 CAEs (women, n = 10) and 20 adults with asthma (women, n = 13; age 22-61 years). Five successive refined versions were produced. Major changes were made to PDA terminology, instructions, paper size, and visual presentation. Two CAEs (women, n = 2) and 26 adults with asthma (women, n = 19; age 20-65 years) field tested PDA. Minor changes were made to language and instructions to ensure usability. The final version was a color-printed, 12-page, A3-sized booklet.Our newly developed PDA was found acceptable and usable in target users.