Methods used to account for caregivers' sex and gender within studies examining the financial burden of caregivers of children and adolescents : Results from a scoping review.

Background: Interest in the financial burden of informal caregivers has been growing. Unfortunately, it remains unclear which method(s) should be used when quantifying this burden. Purpose: We conducted a scoping review aimed at identifying which methods have been used to conduct such work and quantified their performance. We were also interested in examining how sex and gender considerations were considered within selected studies. Data Sources: Using a standardized approach, we identified studies published between 2012 and 2022 that aimed to document the financial burden of caregivers to child and adolescent patients. Our search strategy was applied to the MEDLINE, Embase, CINHAL, and Academic Search Premier databases. Study Selection: Manuscript selection was performed by pairs of reviewers. Data Extraction: Data extraction was performed by one reviewer with a second reviewer performing quality control. Results were reported using a narrative approach. Data Synthesis: We identified 9801 unique citations, of which 200 were included in our review. Selected studies covered various disease area (eg, infection/parasitic diseases [n = 31, 16%]) and included quantitative (n = 180, 90%), qualitative (n = 4, 2%) and mixed study designs (n = 16, 8%). Most studies (n = 182, 91%) used questionnaires/surveys, either alone or in combination with other methods, to assess caregivers' financial burden. Less than half (n = 93, 47%) of studies reported on caregivers' sex and none reported on their gender. Conclusion: We conducted an unrestricted review of published studies examining caregiver's financial burden which allowed us to identify general methodological trends observed in this literature. We believe this work may help improve future studies focusing on this important issue.

Six Externally Validated Prognostic Models Have Potential Clinical Value to Predict Patient Health Outcomes in the Rehabilitation of Musculoskeletal Conditions: A Systematic Review.

OBJECTIVE: The purpose of this systematic review was to identify and appraise externally validated prognostic models to predict a patient's health outcomes relevant to physical rehabilitation of musculoskeletal (MSK) conditions. METHODS: We systematically reviewed 8 databases and reported our findings according to Preferred Reporting Items for Systematic Reviews and Meta-Analysis 2020. An information specialist designed a search strategy to identify externally validated prognostic models for MSK conditions. Paired reviewers independently screened the title, abstract, and full text and conducted data extraction. We extracted characteristics of included studies (eg, country and study design), prognostic models (eg, performance measures and type of model) and predicted clinical outcomes (eg, pain and disability). We assessed the risk of bias and concerns of applicability using the prediction model risk of bias assessment tool. We proposed and used a 5-step method to determine which prognostic models were clinically valuable. RESULTS: We found 4896 citations, read 300 full-text articles, and included 46 papers (37 distinct models). Prognostic models were externally validated for the spine, upper limb, lower limb conditions, and MSK trauma, injuries, and pain. All studies presented a high risk of bias. Half of the models showed low concerns for applicability. Reporting of calibration and discrimination performance measures was often lacking. We found 6 externally validated models with adequate measures, which could be deemed clinically valuable [ie, (1) STart Back Screening Tool, (2) Wallis Occupational Rehabilitation RisK model, (3) Da Silva model, (4) PICKUP model, (5) Schellingerhout rule, and (6) Keene model]. Despite having a high risk of bias, which is mostly explained by the very conservative properties of the PROBAST tool, the 6 models remain clinically relevant. CONCLUSION: We found 6 externally validated prognostic models developed to predict patients' health outcomes that were clinically relevant to the physical rehabilitation of MSK conditions. IMPACT: Our results provide clinicians with externally validated prognostic models to help them better predict patients' clinical outcomes and facilitate personalized treatment plans. Incorporating clinically valuable prognostic models could inherently improve the value of care provided by physical therapists.

The impact of technology systems and level of support in digital mental health interventions: a secondary meta-analysis.

BACKGROUND: The majority of people with a chronic disease (e.g., diabetes, hypertension, COPD) have more than one concurrent condition and are also at higher risk for developing comorbidities in mental health, including anxiety and depression. There is an urgent need for more relevant and accurate data on digital interventions in this area to prepare for an increase demand for mental health services. The aim of this study was to conduct a meta-analysis of the digital mental health interventions for people with comorbid physical and mental chronic diseases to compare the effect of technology systems and level of support. METHODS: This secondary meta-analysis follows a rapid review of systematic reviews, a virtual workshop with knowledge users to identify research questions and a modified Delphi study to guide research methods: What types of digital health interventions (according to a recognized categorization) are the most effective for the management of concomitant mental health and chronic disease conditions in adults? We conducted a secondary analysis of the primary studies identified in the rapid review. Two reviewers independently screened the titles and abstracts and applied inclusion criteria: RCT design using a digital mental health intervention in a population of adults with another chronic condition, published after 2010 in French or English, and including an outcome measurement of anxiety or depression. RESULTS: Seven hundred eight primary studies were extracted from the systematic reviews and 84 primary studies met the inclusion criteria Digital mental health interventions were significantly more effective than in-person care for both anxiety and depression outcomes. Online messaging was the most effective technology to improve anxiety and depression scores; however, all technology types were effective. Interventions partially supported by healthcare professionals were more effective than self-administered. CONCLUSIONS: While our meta-analysis identifies digital intervention's characteristics are associated with better effectiveness, all technologies and levels of support could be used considering implementation context and population. TRIAL REGISTRATION: The protocol for this review is registered in the National Collaborating Centre for Methods and Tools (NCCMT) COVID-19 Rapid Evidence Service (ID 75).

Strategies to engage family physicians in primary care research: A systematic review.

RATIONALE: Moving towards high quality primary health care, involving family physicians in primary care research becomes an essential prerequisite to ensures a better adoption and routinization of patient-centred, evidence-based practices. AIM: To assess the effectiveness of strategies to engage family physicians in primary care research. METHODS: We systematically reviewed evidence for strategies used to engage family physicians in primary care research. We included any study design that reported at least one quantitative outcome. Searches were carried out on MEDLINE, Embase, PsycINFO and Web of Science. Pairs of reviewers independently screened for publications in two stages using standardized forms. We performed data analysis through a narrative synthesis approach, using the Reasoned-action approach as framework. RESULTS: A total of 4859 deduped records were identified of which 41 studies met the eligibility criteria and were included for analysis. The majority of studies (n = 35) investigated family physician's participation in a research project. They aimed to influence family physicians' intention (n = 7) or their ability (n = 3) to participate in a research project. Three types of strategies (compensation/incentive, recruitment by a peer and support from a research network or an academic institution) demonstrated a significant increase in participation rate. Methodological quality of the studies evaluating these strategies was relatively low. Few studies (n = 6) targeted research capacity-building programmes with no significant impact noted. CONCLUSION: Numerous strategies have been used to engage family physicians in primary care research, but few studies evaluated their effectiveness in a rigorous way. REGISTRATION: The protocol of this review was registered with the SPOR Evidence Alliance and on the PROSPERO platform (registration number: CRD42020189322).

Scoping review of rehabilitation care models for post COVID-19 condition.

Objective: To systematically map the current evidence about the characteristics of health systems, providers and patients to design rehabilitation care for post coronavirus disease 2019 (COVID-19) condition. Methods: We conducted a scoping review by searching the databases: MEDLINE®, Embase®, Web of Science, Cochrane COVID-19 Registry and Cochrane Central Register of Controlled Trials, from inception to 22 April 2022. The search strategy included terms related to (i) post COVID-19 condition and other currently known terminologies; (ii) care models and pathways; and (iii) rehabilitation. We applied no language or study design restrictions. Two pairs of researchers independently screened title, abstracts and full-text articles and extracted data. We charted the evidence according to five topics: (i) care model components and functions; (ii) safe delivery of rehabilitation; (iii) referral principles; (iv) service delivery settings; and (v) health-care professionals. Findings: We screened 13 753 titles and abstracts, read 154 full-text articles, and included 37 articles. The current evidence is conceptual and expert based. Care model components included multidisciplinary teams, continuity or coordination of care, people-centred care and shared decision-making between clinicians and patients. Care model functions included standardized symptoms assessment, telehealth and virtual care and follow-up system. Rehabilitation services were integrated at all levels of a health system from primary care to tertiary hospital-based care. Health-care workers delivering services within a multidisciplinary team included mostly physiotherapists, occupational therapists and psychologists. Conclusion: Key policy messages include implementing a multilevel and multiprofessional model; leveraging country health systems' strengths and learning from other conditions; financing rehabilitation research providing standardized outcomes; and guidance to increase patient safety.

Personalized care planning and shared decision making in collaborative care programs for depression and anxiety disorders: A systematic review.

BACKGROUND: Collaborative care is an evidence-based approach to improving outcomes for common mental disorders in primary care. Efforts are underway to broadly implement the collaborative care model, yet the extent to which this model promotes person-centered mental health care has been little studied. The aim of this study was to describe practices related to two patient and family engagement strategies-personalized care planning and shared decision making-within collaborative care programs for depression and anxiety disorders in primary care. METHODS: We conducted an update of a 2012 Cochrane review, which involved searches in Cochrane CCDAN and CINAHL databases, complemented by additional database, trial registry, and cluster searches. We included programs evaluated in a clinical trials targeting adults or youth diagnosed with depressive or anxiety disorders, as well as sibling reports related to these trials. Pairs of reviewers working independently selected the studies and data extraction for engagement strategies was guided by a codebook. We used narrative synthesis to report on findings. RESULTS: In total, 150 collaborative care programs were analyzed. The synthesis showed that personalized care planning or shared decision making were practiced in fewer than half of programs. Practices related to personalized care planning, and to a lesser extent shared decision making, involved multiple members of the collaborative care team, with care managers playing a pivotal role in supporting patient and family engagement. Opportunities for quality improvement were identified, including fostering greater patient involvement in collaborative goal setting and integrating training and decision aids to promote shared decision making. CONCLUSION: This review suggests that personalized care planning and shared decision making could be more fully integrated within collaborative care programs for depression and anxiety disorders. Their absence in some programs is a missed opportunity to spread person-centered mental health practices in primary care.

Implementation Strategies for Knowledge Products in Primary Health Care: Systematic Review of Systematic Reviews.

BACKGROUND: The underuse or overuse of knowledge products leads to waste in health care, and primary care is no exception. OBJECTIVE: This study aimed to characterize which knowledge products are frequently implemented, the implementation strategies used in primary care, and the implementation outcomes that are measured. METHODS: We performed a systematic review (SR) of SRs using the Cochrane systematic approach to include eligible SRs. The inclusion criteria were any primary care contexts, health care professionals and patients, any Effective Practice and Organization of Care implementation strategies of specified knowledge products, any comparators, and any implementation outcomes based on the Proctor framework. We searched the MEDLINE, EMBASE, CINAHL, Ovid PsycINFO, Web of Science, and Cochrane Library databases from their inception to October 2019 without any restrictions. We searched the references of the included SRs. Pairs of reviewers independently performed selection, data extraction, and methodological quality assessment by using A Measurement Tool to Assess Systematic Reviews 2. Data extraction was informed by the Effective Practice and Organization of Care taxonomy for implementation strategies and the Proctor framework for implementation outcomes. We performed a descriptive analysis and summarized the results by using a narrative synthesis. RESULTS: Of the 11,101 records identified, 81 (0.73%) SRs were included. Of these 81, a total of 47 (58%) SRs involved health care professionals alone. Moreover, 15 SRs had a high or moderate methodological quality. Most of them addressed 1 type of knowledge product (56/81, 69%), common clinical practice guidelines (26/56, 46%) or management, and behavioral or pharmacological health interventions (24/56, 43%). Mixed strategies were used for implementation (67/81, 83%), predominantly education-based (meetings in 60/81, 74%; materials distribution in 59/81, 73%; and academic detailing in 45/81, 56%), reminder (53/81, 36%), and audit and feedback (40/81, 49%) strategies. Education meetings (P=.13) and academic detailing (P=.11) seemed to be used more when the population was composed of health care professionals alone. Improvements in the adoption of knowledge products were the most commonly measured outcome (72/81, 89%). The evidence level was reported in 12% (10/81) of SRs on 62 outcomes (including 48 improvements in adoption), of which 16 (26%) outcomes were of moderate or high level. CONCLUSIONS: Clinical practice guidelines and management and behavioral or pharmacological health interventions are the most commonly implemented knowledge products and are implemented through the mixed use of educational, reminder, and audit and feedback strategies. There is a need for a strong methodology for the SR of randomized controlled trials to explore their effectiveness and the entire cascade of implementation outcomes.

Global prevalence of antidepressant drug utilization in the community: protocol for a systematic review.

INTRODUCTION: Antidepressant drugs are the most frequently prescribed medication for mental disorders. They are also used off-label and for non-psychiatric indications. Prescriptions of antidepressants have increased in the last decades, but no systematic review exists on the extent of their use in the community. METHODS AND ANALYSIS: We will conduct a systematic review to estimate the prevalence of antidepressant use in the community. We will search for studies published from 1 January 2010 in the Embase and MEDLINE databases using a combination of controlled vocabulary and keywords adjusted for each database without any language restriction. The main inclusion criterion is the presence of prevalence data of antidepressant utilization. Thus, we will include all studies with a descriptive observational design reporting the prevalence of antidepressant use in the community. Study selection (by title/abstract and full-text screening) and data extraction for included studies will be independently conducted by pairs of reviewers. We will then synthesize the data on the prevalence of antidepressant use in individuals living in the community. If possible, we will perform a meta-analysis to generate prevalence-pooled estimates. If the data allows it, we will conduct subgroup analyses by antidepressant class, age, sex, country and other sociodemographic categories. We will evaluate the risk of bias for each included study through a quality assessment using the Joanna Briggs Institute Critical Appraisal tool: Checklist for Studies Reporting Prevalence Data. DistillerSR software will be used for the management of this review. ETHICS AND DISSEMINATION: Ethical approval is not required for this review as it will not directly involve human or animal subjects. The findings of our systematic review will be disseminated through publications in peer-reviewed journals, the Qualaxia Network (https://qualaxia.org), presentations at international conferences on mental health and pharmacoepidemiology, as well as general public events. PROSPERO REGISTRATION NUMBER: CRD42021247423.

Digital health interventions for the management of mental health in people with chronic diseases: a rapid review.

OBJECTIVE: Determine the effectiveness of digital mental health interventions for individuals with a concomitant chronic disease. DESIGN: We conducted a rapid review of systematic reviews. Two reviewers independently conducted study selection and risk of bias evaluation. A standardised extraction form was used. Data are reported narratively. INTERVENTIONS: We included systematic reviews of digital health interventions aiming to prevent, detect or manage mental health problems in individuals with a pre-existing chronic disease, including chronic mental health illnesses, published in 2010 or after. MAIN OUTCOME MEASURE: Reports on mental health outcomes (eg, anxiety symptoms and depression symptoms). RESULTS: We included 35 reviews, totalling 702 primary studies with a total sample of 50 692 participants. We structured the results in four population clusters: (1) chronic diseases, (2) cancer, (3) mental health and (4) children and youth. For populations presenting a chronic disease or cancer, health provider directed digital interventions (eg, web-based consultation, internet cognitive-behavioural therapy) are effective and safe. Further analyses are required in order to provide stronger recommendations regarding relevance for specific population (such as children and youth). Web-based interventions and email were the modes of administration that had the most reports of improvement. Virtual reality, smartphone applications and patient portal had limited reports of improvement. CONCLUSIONS: Digital technologies could be used to prevent and manage mental health problems in people living with chronic conditions, with consideration for the age group and type of technology used.

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

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

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

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

Improving a Web-Based Tool to Support Older Adults to Stay Independent at Home: Qualitative Study.

BACKGROUND: Older adults desire to stay independent at home for as long as possible. We developed an interactive website to inform older adults and caregivers about ways to achieve this. OBJECTIVE: This study aimed to perform an in-depth exploration among potential end users about how to improve the interactive website to better inform older adults and caregivers about ways to stay independent at home. METHODS: To complement the results of a quantitative survey on the usability and acceptability of the website before implementation, we conducted a qualitative descriptive study. Using multiple recruitment strategies, we recruited a purposeful sample of older adults (aged ≥65 years) and caregivers of older adults struggling to stay independent at home. We conducted face-to-face or telephonic interviews in either English or French. In addition, we collected sociodemographic characteristics, other characteristics of participants (eg, health, digital profile, and perception of retirement homes), and experiences with using the website (factors facilitating the use of the website, barriers to its use, and suggestions for improvement). Interviews were audio recorded, transcribed verbatim, and thematically analyzed by two researchers. RESULTS: We recruited 15 participants, including 5 older adults (mean age 75 years, SD 6) and 10 caregivers (mean age 57 years, SD 14). The mean interview time was 32 min (SD 14). Most older adults had either mobility or health problems or both, and many of them were receiving home care services (eg, blood pressure measurement and body care). Overall, participants found the website easy to navigate using a computer, reassuring, and useful for obtaining information. Barriers were related to navigation (eg, difficult to navigate with a cellphone), relevance (eg, no specific section for caregivers), realism (eg, some resources presented are not state funded), understandability (eg, the actors' accents were difficult to understand), and accessibility (eg, not adapted for low digital literacy). Suggestions for improvement included a needs assessment section to direct users to the support appropriate to their needs, addition of information about moving into residential care, a section for caregivers, distinction between state-provided and private support services, simpler language, expansion of content to be relevant to all of Canada, and video subtitles for the hearing impaired. CONCLUSIONS: Users provided a wealth of information about the needs of older adults who were facing a loss of autonomy and about what such a website could usefully provide. The request for less generic and more personalized information reflects the wide range of needs that electronic health innovations, such as our interactive website, need to address. After integrating the changes suggested, the new website-Support for Older Adults to Stay Independent at Home (SUSTAIN)-will be implemented and made available to better assist older adults and caregivers in staying independent at home.

Strategies for engaging patients and families in collaborative care programs for depression and anxiety disorders: A systematic review.

BACKGROUND: Patients and families are often referred to as important partners in collaborative mental health care (CMHC). However, how to meaningfully engage them as partners remains unclear. We aimed to identify strategies for engaging patients and families in CMHC programs for depression and anxiety disorders. METHODS: We updated a Cochrane review of CMHC programs for depression and anxiety disorders. Searches were conducted in Cochrane CCDAN and CINAHL, complemented by additional database searches, trial registry searches, and cluster searches for 'sibling' articles. Coding and data extraction of engagement strategies was an iterative process guided by a conceptual framework. We used narrative synthesis and descriptive statistics to report on findings. FINDINGS: We found 148 unique CMCH programs, described in 578 articles. Most programs (96%) featured at least one strategy for engaging patients or families. Programs adopted 15 different strategies overall, with a median of two strategies per program (range 0-9 strategies). The most common strategies were patient education (87% of programs) and self-management supports (47% of programs). Personalized care planning, shared decision making, and family or peer supports were identified in fewer than one third of programs. LIMITATIONS: Our search strategy was designed to capture programs evaluated in clinical trials and so other innovative programs not studied in trials were likely missed. CONCLUSION: Most CMHC programs for depression and anxiety disorders adopted a limited number of strategies to engage patients and families in their care. However, this review identifies numerous strategies that can be used to strengthen the patient- and family-centeredness of collaborative care.

The pitfalls of scaling up evidence-based interventions in health.

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.

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

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

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

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

Strategies and impacts of patient and family engagement in collaborative mental healthcare: protocol for a systematic and realist review.

INTRODUCTION: Collaborative mental healthcare (CMHC) has garnered worldwide interest as an effective, team-based approach to managing common mental disorders in primary care. However, questions remain about how CMHC works and why it works in some circumstances but not others. In this study, we will review the evidence on one understudied but potentially critical component of CMHC, namely the engagement of patients and families in care. Our aims are to describe the strategies used to engage people with depression or anxiety disorders and their families in CMHC and understand how these strategies work, for whom and in what circumstances. METHODS AND ANALYSIS: We are conducting a review with systematic and realist review components. Review part 1 seeks to identify and describe the patient and family engagement strategies featured in CMHC interventions based on systematic searches and descriptive analysis of these interventions. We will use a 2012 Cochrane review of CMHC as a starting point and perform new searches in multiple databases and trial registers to retrieve more recent CMHC intervention studies. In review part 2, we will build and refine programme theories for each of these engagement strategies. Initial theory building will proceed iteratively through content expert consultations, electronic searches for theoretical literature and review team brainstorming sessions. Cluster searches will then retrieve additional data on contexts, mechanisms and outcomes associated with engagement strategies, and pairs of review authors will analyse and synthesise the evidence and adjust initial programme theories. ETHICS AND DISSEMINATION: Our review follows a participatory approach with multiple knowledge users and persons with lived experience of mental illness. These partners will help us develop and tailor project outputs, including publications, policy briefs, training materials and guidance on how to make CMHC more patient-centred and family-centred. PROSPERO REGISTRATION NUMBER: CRD42015025522.

User-centered design and the development of patient decision aids: protocol for a systematic review.

BACKGROUND: Providing patient-centered care requires that patients partner in their personal health-care decisions to the full extent desired. Patient decision aids facilitate processes of shared decision-making between patients and their clinicians by presenting relevant scientific information in balanced, understandable ways, helping clarify patients' goals, and guiding decision-making processes. Although international standards stipulate that patients and clinicians should be involved in decision aid development, little is known about how such involvement currently occurs, let alone best practices. This systematic review consisting of three interlinked subreviews seeks to describe current practices of user involvement in the development of patient decision aids, compare these to practices of user-centered design, and identify promising strategies. METHODS/DESIGN: A research team that includes patient and clinician representatives, decision aid developers, and systematic review method experts will guide this review according to the Cochrane Handbook and PRISMA reporting guidelines. A medical librarian will hand search key references and use a peer-reviewed search strategy to search MEDLINE, EMBASE, PubMed, Web of Science, the Cochrane Library, the ACM library, IEEE Xplore, and Google Scholar. We will identify articles across all languages and years describing the development or evaluation of a patient decision aid, or the application of user-centered design or human-centered design to tools intended for patient use. Two independent reviewers will assess article eligibility and extract data into a matrix using a structured pilot-tested form based on a conceptual framework of user-centered design. We will synthesize evidence to describe how research teams have included users in their development process and compare these practices to user-centered design methods. If data permit, we will develop a measure of the user-centeredness of development processes and identify practices that are likely to be optimal. DISCUSSION: This systematic review will provide evidence of current practices to inform approaches for involving patients and other stakeholders in the development of patient decision aids. We anticipate that the results will help move towards the establishment of best practices for the development of patient-centered tools and, in turn, help improve the experiences of people who face difficult health decisions. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42014013241.