MMpowerment: Empowering patients with multiple myeloma for shared decision-making by developing an intervention to integrate personal preferences into digital care pathways.

OBJECTIVE: As part of a quality improvement initiative in the context of value-based health care we aimed to optimize the shared decision-making (SDM) process in the care pathway for Multiple Myeloma as part of a digital care pathway (DCP). For this, more insight was needed in health care professionals' (HCPs') perspectives on SDM, and how SDM elements could be addressed in a DCP for MM to facilitate HCPs' performance of SDM. METHODS: HCPs were interviewed as per the theory of planned behaviour and the model of organizational context and SDM (phase 1). Multidisciplinary development sessions were organized to discuss concepts of the solution with HCPs (phase 2). The solution was evaluated with two patients from the quality improvement team. RESULTS: In phase 1, ten interviews were held. HCPs' attitudes and the subjective norm towards SDM were positive, and the intention to perform SDM was high. The clinical environment (physical context, disease characteristics, assumptions about patient characteristics, and workflows) for MM posed challenges on the actual SDM behavior. Education and use of the DCP to create awareness of SDM were seen as possible facilitators for SDM. A prepared and active patient would facilitate the SDM process. In phase 2, three concept solutions were developed before arriving at the final solution. The final solution consisted of three elements to incorporate SDM steps in the DCP: 1) creating patient awareness and activation with two questions about their preferences prior to a consultation, 2) visualisation of preferences centrally in the DCP to trigger HCP to discuss them, 3) monitoring and improving SDM with patient-questionnaires after decision-making. Patients and HCPs were willing to implement it. CONCLUSION: HCPs intention to engage in SDM was high, but their actual behaviour was challenged by the clinical environment. A 3-element DCP-based intervention was developed to increase SDM. PATIENT OR PUBLIC CONTRIBUTION: Input on the solution was obtained from end-users including two patients and ten healthcare professionals.

Barriers and facilitators of meaningful patient participation at the collective level in healthcare organizations: A systematic review.

INTRODUCTION: Collective patient participation, such as patient participation in policy making, has become increasingly important to achieve high-quality care. However, there is little knowledge on how to let patients participate in a meaningful manner at this level. The aim of this systematic literature review was to provide an overview of barriers, facilitators, and associated impact of collective patient participation. METHODS: PubMed and EMBASE were searched until May 2023 for studies that evaluated collective patient participation. Study characteristics, methods for patient participation, barriers and facilitators, and impact (if measured) of patient participation were extracted from the articles. RESULTS: We included 59 articles. Identified barriers and facilitators of collective patient participation were grouped into five categories: (1) preconditions for patient participation, (2) strategy for patient participation, (3) preparation of patients and staff for patient participation, (4) support for patients and staff during patient participation, and (5) evaluation of patient participation. Impact of patient participation was reported in 34 included studies at three levels: quality of care and research, the team and organization, and the participants themselves. Only three studies reported quantitative outcomes. CONCLUSION: Interestingly, similar challenges were experienced during a period of twenty years, indicating that little progress has been made in structuring patient participation. Our overview of barriers and facilitators will therefore help to improve and structure collective patient participation.

Improving Outcome-Driven Care in Multiple Myeloma Using Patient-Reported Outcomes: A Qualitative Evaluation Study.

BACKGROUND AND OBJECTIVE: Multiple myeloma is an incurable disease with a considerable illness and treatment burden, which negatively impacts patients' quality of life. This study aimed to evaluate the implementation of multiple myeloma care in five Dutch hospitals, related to the three objectives of outcome-driven care, which are defined as (1) providing information for shared decision making in individual patient care, (2) supporting the learning capacity of healthcare professionals and healthcare institutions through benchmarking and (3) developing outcome-driven and patient-centred contracting by health insurers. METHODS: In this qualitative study, semi-structured interviews about experiences with patient-reported outcomes were conducted with patients, healthcare professionals and other stakeholders 2 years after implementation. Data were thematically analysed, and emerging topics were clustered around the three objectives of outcome-driven care. RESULTS: A total of 46 interviews were held (15 with patients, 16 with professionals and 15 with other stakeholders) that showed patients with multiple myeloma were willing to complete patient-reported outcomes, although integration of patient-reported outcomes in shared decision making fell short in clinical practice. Aggregated patient-reported outcomes were considered important for improving quality of care; however, data collection and data exchange are hindered by privacy legislation, limitations of IT systems and a lack of data standards. Patient-reported outcomes were expected to contribute to cost-effective multiple myeloma treatment, yet outcome-driven reimbursement is still lacking. CONCLUSIONS: Outcome-driven multiple myeloma care using patient-reported outcomes is feasible, provided that (1) patient-reported outcomes and shared decision making are integrated into clinical practice, (2) legal and technical obstacles hindering data collection are removed and (3) health insurers adjust their reimbursement plans to facilitate outcome-driven care.

Why real world outcome information is indispensable in making treatment decisions for multiple myeloma.

OBJECTIVE: A next step in value-based healthcare (VBHC) is to use outcome information (OI) to inform patients about (personalized) outcomes of care in order to support decision-making processes. We aimed to explore multiple myeloma (MM) patients' and caregivers' views on communication of OI and (shared) decision-making (SDM). METHODS: Focus groups with MM patients and caregivers. Main topics were experiences and needs with information provision, communication, decision-making, and use of OI. Focus groups were audiotaped, transcribed verbatim and analyzed in an iterative process by two researchers using open coding. Member checks were performed. RESULTS: Two focus groups were held with 11 patients (91% male, M=71 years old) and 10 caregivers (89% partners). Information needs were different per moment in the disease trajectory and purpose. Patients were implicitly involved in decisions, but they were not always aware of options and no active weighing of values took place. Outcome information was mostly provided on an individual level, to monitor disease progression and initiate decisions about the need for changes in ongoing treatment regimens (follow-up treatment lines). Patients appreciated the current process of information provision and decision-making, but prefer more option awareness, a bigger role in decision-making and more OI to 1) weigh outcomes for decision-making; 2) get insight in their care trajectory; and 3) compare with other patients. CONCLUSIONS: Participants were satisfied with information provision and decision-making, but they were only implicitly involved in decisions. Real world OI derived from VBHC improvement cycles for MM may fulfil MM patients' and caregivers' information needs and support treatment decision-making.

For which decisions is Shared Decision Making considered appropriate? - A systematic review.

OBJECTIVE: To identify decision characteristics for which SDM authors deem SDM appropriate or not, and what arguments are used. METHODS: We applied two search strategies: we included SDM models from an earlier review (strategy 1) and conducted a new search in eight databases to include papers other than describing an SDM model, such as original research, opinion papers and reviews (strategy 2). RESULTS: From the 92 included papers, we identified 18 decision characteristics for which authors deemed SDM appropriate, including preference-sensitive, equipoise and decisions where patient commitment is needed in implementing the decision. SDM authors indicated limits to SDM, especially when there are immediate life-saving measures needed. We identified four decision characteristics on which authors of different papers disagreed on whether or not SDM is appropriate. CONCLUSION: The findings of this review show the broad range of decision characteristics for which authors deem SDM appropriate, the ambiguity of some, and potential limits of SDM. PRACTICE IMPLICATIONS: The findings can stimulate clinicians to (re)consider pursuing SDM in situations in which they did not before. Additionally, it can inform SDM campaigns and educational programs as it shows for which decision situations SDM might be more or less challenging to practice.

Effectiveness and implementation of SHared decision-making supported by OUTcome information among patients with breast cancer, stroke and advanced kidney disease: SHOUT study protocol of multiple interrupted time series.

INTRODUCTION: Within the value-based healthcare framework, outcome data can be used to inform patients about (treatment) options, and empower them to make shared decisions with their health care professional. To facilitate shared decision-making (SDM) supported by outcome data, a multicomponent intervention has been designed, including patient decision aids on the organisation of post-treatment surveillance (breast cancer); discharge location (stroke) and treatment modality (advanced kidney disease), and training on SDM for health care professionals. The SHared decision-making supported by OUTcome information (SHOUT) study will examine the effectiveness of the intervention and its implementation in clinical practice. METHODS AND ANALYSIS: Multiple interrupted time series will be used to stepwise implement the intervention. Patients diagnosed with either breast cancer (N=630), stroke (N=630) or advanced kidney disease (N=473) will be included. Measurements will be performed at baseline, three (stroke), six and twelve (breast cancer and advanced kidney disease) months. Trends on outcomes will be measured over a period of 20 months. The primary outcome will be patients' perceived level of involvement in decision-making. Secondary outcomes regarding effectiveness will include patient-reported SDM, decisional conflict, role in decision-making, knowledge, quality of life, preferred and chosen care, satisfaction with the intervention, healthcare utilisation and health outcomes. Outcomes regarding implementation will include the implementation rate and a questionnaire on the health care professionals' perspective on the implementation process. ETHICS AND DISSEMINATION: The Medical research Ethics Committees United in Nieuwegein, the Netherlands, has confirmed that the Medical Research Involving Human Subjects Act does not apply to this study. Bureau Onderzoek & Innovatie of Santeon, the Netherlands, approved this study. The results will contribute to insight in and knowledge on the use of outcome data for SDM, and can stimulate sustainable implementation of SDM. TRIAL REGISTRATION NUMBER: NL8374, NL8375 and NL8376.

Mapping the extent, range and nature of research activity on value-based healthcare in the 15 years following its introduction (2006-2021): a scoping review.

OBJECTIVES: We aimed to systematically map the extent, range and nature of research activity on value-based healthcare (VBHC), and to identify research gaps. DESIGN: A scoping review with an additional cited reference search was conducted, guided by the Joanna Briggs Institute methodology. DATA SOURCES: The search was undertaken in PubMed, Embase and Web of Science. ELIGIBILITY CRITERIA: Eligible articles mentioned VBHC or value with reference to the work of Porter or provided a definition of VBHC or value. DATA EXTRACTION AND SYNTHESIS: Data were independently extracted using a data extraction form. Two independent reviewers double extracted data from 10% of the articles. Data of the remaining articles (90%) were extracted by one reviewer and checked by a second. The strategic agenda of Porter and Lee was used to categorise the included articles. RESULTS: The searches yielded a total of 27,931 articles, of which 1,242 were analysed. Most articles were published in North America. Most articles described an application of VBHC by measuring outcomes and costs (agenda item 2). The other agenda items were far less frequently described or implemented. Most of these articles were conceptual, meaning that nothing was actually changed or implemented. CONCLUSION: The number of publications increased steadily after the introduction of VBHC in 2006. Almost one-fifth of the articles could not be categorised in one of the items of the strategic agenda, which may lead to the conclusion that the current strategic agenda could be extended. In addition, a practical roadmap or guideline to implement VBHC is still lacking. Future research could fill this gap by specifically studying the effectiveness of VBHC in day-to-day clinical practice.

Shared decision-making and person-centred care approaches in three African regions.

Five years ago, we published a 'wake-up' paper on shared decision-making (SDM) in West Africa. In the current paper, our overview has been expanded to more African regions (central and north, in addition to the west) as well as to person-centred care (PCC) approaches. While these concepts are known in all regions to varying degrees, results indicate that most known SDM and PCC efforts originate from West Africa. In general, the focus seems to be predominantly on partnership-driven healthcare programs, such as COVID-19 infection; HIV/AIDS and maternal/neonatal care; and patient-provider communication and patient participation instead of comprehensive SDM approaches. The findings also indicate the absence of SDM training for African health professionals beyond specific healthcare programs, but some education on decision-making or critical appraisal of health information in primary or undergraduate health schools is carried out in certain African countries. Building on these sectoral initiatives, future directions include developing research and training programs in the perspective of scaling effective approaches.

Practitioners' perceptions of acceptability of a question prompt list about palliative care for advance care planning with people living with dementia and their family caregivers: a mixed-methods evaluation study.

OBJECTIVES: In oncology and palliative care, patient question prompt lists (QPLs) with sample questions for patient and family increased patients' involvement in decision-making and improved outcomes if physicians actively endorsed asking questions. Therefore, we aim to evaluate practitioners' perceptions of acceptability and possible use of a QPL about palliative and end-of-life care in dementia. DESIGN: Mixed-methods evaluation study of a QPL developed with family caregivers and experts comprising a survey and interviews with practitioners. SETTING: Two academic medical training centres for primary and long-term care in the Netherlands. PARTICIPANTS: Practitioners (n=66; 73% woman; mean of 21 (SD 11) years of experience) who were mostly general practitioners and elderly care physicians. OUTCOMES: The main survey outcome was acceptability measured with a 15-75 acceptability scale with ≥45 meaning 'acceptable'. RESULTS: The survey response rate was 21% (66 of 320 participated). The QPL was regarded as acceptable (mean 51, SD 10) but 64% felt it was too long. Thirty-five per cent would want training to be able to answer the questions. Those who felt unable to answer (31%) found the QPL less acceptable (mean 46 vs 54 for others; p=0.015). We identified three themes from nine interviews: (1) enhancing conversations through discussing difficult topics, (2) proactively engaging in end-of-life conversations and (3) possible implementation. CONCLUSION: Acceptability of the QPL was adequate, but physicians feeling confident to be able to address questions about end-of-life care is crucial when implementing it in practice, and may require training. To facilitate discussions of advance care planning and palliative care, families and persons with dementia should also be empowered to access the QPL themselves.

Technology to Improve Autonomy and Inform Housing Decisions for Older Adults With Memory Problems Who Live at Home in Canada, Sweden, and the Netherlands: Protocol for a Multipronged Mixed Methods Study.

BACKGROUND: Understanding 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. OBJECTIVE: We 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. METHODS: Informed 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. RESULTS: The 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. CONCLUSIONS: This 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 REGISTRATION: ClinicalTrials.gov NCT04267484; https://clinicaltrials.gov/ct2/show/NCT04267484. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/19244.

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.

20th Anniversary Ottawa Decision Support Framework: Part 3 Overview of Systematic Reviews and Updated Framework.

Introduction. The Ottawa Decision Support Framework (ODSF) has guided practitioners and patients facing difficult decisions for 20 years. It asserts that decision support interventions that address patients' decisional needs improve decision quality. Purpose. To update the ODSF based on a synthesis of evidence. Methods. We conducted an overview of systematic reviews, searching 9 electronic databases. Eligible reviews included decisional needs assessments, decision support interventions, and decisional outcome measures guided by the ODSF. We extracted data and synthesized results narratively. Eight ODSF developers/expert users from 4 disciplines revised the ODSF. Results. Of 4656 citations, we identified 4 eligible reviews (>250 studies, >100 different decisions, >50,000 patients, 18 countries, 5 continents). They reported current ODSF decisional needs and their most frequent manifestations in the areas of inadequate knowledge/information, unclear values, decisional conflict/uncertainty, and inadequate support. They uncovered 11 new manifestations of 6 decisional needs. Using the Decisional Conflict Scale (DCS) to assess decisional needs, average scores were elevated at baseline and declined shortly after decision making, even without information interventions. Patient decision aids were superior to usual care in reducing total DCS scores and improving decision quality. We revised the ODSF by refining definitions of 6 decisional needs and adding new interventions to address 4 needs. We added a decision process outcome and eliminated secondary outcomes unlikely to improve across a range of decisions, retaining the implementation/continuance of the chosen option and appropriate use/costs of health services. Conclusions. We updated the ODSF to reflect the current evidence and identified implications for practice and further research.

Engaging Caregivers in Health-Related Housing Decisions for Older Adults With Cognitive Impairment: A Cluster Randomized Trial.

BACKGROUND AND OBJECTIVES: Informal caregivers are rarely as involved as they want to be in the housing decisions of cognitively impaired older adults. Lack of awareness of available options and their benefits and risks may lead to decisions that do not reflect older adults' preferences, and to guilt and regret. We assessed the effect of training home care teams in interprofessional shared decision-making (SDM) on the proportion of caregivers who report being active in this decision. RESEARCH DESIGN AND METHODS: In a two-arm pragmatic cluster randomized trial with home care teams working in health centers in the Province of Quebec, we randomized health centers to receive training in interprofessional SDM (intervention) or not (control). Eligible caregivers had made a housing decision for a cognitively impaired adult aged 65 years or older who was receiving services from a home care team. The primary outcome was the proportion of caregivers reporting an active role in decision making. We performed intention-to-treat multilevel analysis. RESULTS: We consecutively enrolled a random group of 16 health centers and recruited 309 caregivers, among whom 296 were included in the analysis. In the intervention arm, the proportion of caregivers reporting an active role in decision making increased by 12% (95% CI -2% to 27%; p = .10). After removal of an influential cluster outlier, the proportion increased to 18% (95% CI: 7%-29%; p < .01). DISCUSSION AND IMPLICATIONS: Training home care teams in interprofessional SDM increased caregiver involvement in health-related housing decisions for cognitively impaired older adults.

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.

Implementation of the three good questions-A feasibility study in Dutch hospital departments.

OBJECTIVES: To determine the feasibility of pragmatic implementation strategies for three good questions (in Dutch: Drie Goede Vragen; 3GV. What are my options; what are the risks and benefits related to these options; and what does this mean for my situation?) to increase shared decision-making (SDM) efforts in Dutch secondary care, and identify barriers and facilitators of implementation. METHODS: Convergent mixed-method design: pre-post surveys with patients attending one of six clinical departments in a Dutch Hospital, post-intervention interviews with patients and health-care professionals. Primary outcomes: feasibility (reach, use of 3GV). SECONDARY OUTCOMES: SDM, experiences with 3GV and decision making. Interviews focused on barriers and facilitators of 3GV use. Interviews were content coded and categorized into determinants of behaviour change. RESULTS: 35% of the respondents who had heard of 3GV (52%) used all three questions. 3GV use did not lead to more SDM (SDMQ9 M = Δ0.3;SE = 2.2) but patients felt empowered to decide (88%) and to SDM (86%). Barriers were as follows: time investment, other SDM projects and perception that the need to use 3GV differs per patient/consultation. Respondents preferred to use 3GV as they saw fit for the consultation, instead of literally asking them. Facilitators: easy, accessible information materials that can be flexibly used. CONCLUSION: Implementation of 3GV seemed feasible, although influenced by contextual characteristics (eg type of decisions, patients, on-going interventions). 3GV contributed to important elements of SDM, and respondents were willing to apply them in a way that suited their situation. PRACTICE IMPLICATIONS: We recommend continuation of current and new implementation strategies to enable 3GV implementation in secondary care.

Decisional Conflict Scale Use over 20 Years: The Anniversary Review.

Background. The Decisional Conflict Scale (DCS) measures 5 dimensions of decision making (feeling: uncertain, uninformed, unclear about values, unsupported; ineffective decision making). We examined the use of the DCS over its initial 20 years (1995 to 2015). Methods. We conducted a scoping review with backward citation search in Google Analytics/Web of Science/PubMed, followed by keyword searches in Cochrane Library, PubMed, Ovid MEDLINE, EMBASE, CINAHL, AMED, PsycINFO, PRO-Quest, and Web of Science. Eligible studies were published between 1995 and March 2015, used an original experimental/observational research design, concerned a health-related decision, and provided DCS data (total/subscales). Author dyads independently screened titles, abstracts, full texts, and extracted data. We performed narrative data synthesis. Results. We included 394 articles. DCS use appeared to increase over time. Three hundred nine studies (76%) used the original DCS, and 29 (7%) used subscales only. Most studies used the DCS to evaluate the impact of decision support interventions (n = 238, 59%). The DCS was translated into 13 languages. Most decisions were made by people for themselves (n = 353, 87%), about treatment (n = 225, 55%), or testing (n = 91, 23%). The most common decision contexts were oncology (n = 113, 28%) and primary care (n = 82, 20%). Conclusions. This is the first study to descriptively synthesize characteristics of DCS data. Use of the DCS as an outcome measure for health decision interventions has increased over its 20-year existence, demonstrating its relevance as a decision-making evaluation measure. Most studies failed to report when decisional conflict was measured during the decision-making process, making scores difficult to interpret. Findings from this study will be used to update the DCS user manual.

Decisional Conflict Scale Findings among Patients and Surrogates Making Health Decisions: Part II of an Anniversary Review.

Background. We explored decisional conflict as measured with the 16-item Decisional Conflict Scale (DCS) and how it varies across clinical situations, decision types, and exposure to decision support interventions (DESIs). Methods. An exhaustive scoping review was conducted using backward citation searches and keyword searches. Eligible studies were published between 1995 and March 2015, used an original experimental/observational research design, concerned a health-related decision, and provided DCS data. Dyads independently screened titles/abstracts and full texts, and extracted data. We performed narrative syntheses and calculated average or median DCS scores. Results. We included 246 articles reporting on 253 studies. DCS scores ranged from 2.4 to 89.6 out of 100. Highest baseline DCS scores were for care planning (30.5 ± 12.8, median = 30.9) and treatment decisions (30.5 ± 14.6, median = 28.0), in contexts of primary care (33.8 ± 19.8), obstetrics/gynecology (28.8 ± 10.4), and geriatrics (32.6 ± 10.7). Baseline scores were high among decision makers who were ill (29.5 ± 13.8, median = 27.2) or making decisions for themselves (29.7 ± 14.8, median = 26.9). Total DCS scores <25 out of 100 were associated with implementing decisions. Without DESIs, DCS scores tended to increase shortly after decision making (>37.4). After DESI use, DCS scores decreased short-term but increased or remained the same long-term (>6 months). Conclusions. DCS scores were highest at baseline and decreased after decision making. DESIs decreased decisional conflict immediately after decision making. The largest improvements after DESIs were in decision makers who were ill, male, or made decisions for themselves. Meta-analyses focusing on decision types, contexts, and interventions could inform hypotheses about the expected effects of DESIs, the best timing for measurement, and interpretation of DCS scores.

Shared Decision Making About Housing Transitions for Persons With Dementia: A Four-Case Care Network Perspective.

BACKGROUND: Persons with dementia (PWDs) and their caregivers often face difficult housing decisions, that is, decisions about their living arrangements, in which the perspectives of all members of the care network should be involved. OBJECTIVE: We performed a qualitative data analysis to assess the extent to which housing decisions for PWDs with their formal and informal caregivers correspond to an interprofessional shared decision making (IP-SDM) approach, and what light this approach sheds on their experiences with decision making. RESEARCH DESIGN AND METHODS: We used the IP-SDM model to content-code and analyze data from 4 care networks, each consisting of a PWD, 2 informal and 2 formal caregivers. RESULTS: Decision making in all networks corresponded to most IP-SDM elements, but never included all network members. Decision making was guided by the wishes of the PWD, but their actual involvement decreased over time. DISCUSSION: Results show that while the IP-SDM model was helpful, the options change with cognitive decline and moving to a nursing home can become inevitable in spite of preferences. IMPLICATIONS: Timely and honest communication helps to mitigate the distress of deciding against patient preferences, as could advance care planning about future housing transitions.

"Please listen to me": A cross-sectional study of experiences of seniors and their caregivers making housing decisions.

BACKGROUND: Little is known about the decision-making experiences of seniors and informal caregivers facing decisions about seniors' housing decisions when objective decision making measures are used. OBJECTIVES: To report on seniors' and caregivers' experiences of housing decisions. DESIGN: A cross-sectional study with a quantitative approach supplemented by qualitative data. SETTING: Sixteen health jurisdictions providing home care services, Quebec province, Canada. PARTICIPANTS: Two separate samples of seniors aged ≥ 65 years and informal caregivers of cognitively impaired seniors who had made a decision about housing. MEASUREMENTS: Information on preferred choice and actual choice about housing, role assumed in the decision, decisional conflict and decision regret was obtained through closed-ended questionnaires. Research assistants paraphrased participants' narratives about their decision-making experiences and made other observations in standardized logbooks. RESULTS: Thirty-one seniors (median age: 85.5 years) and 48 caregivers (median age: 65.1 years) were recruited. Both seniors and caregivers preferred that the senior stay at home (64.5% and 71.7% respectively). Staying home was the actual choice for only 32.2% of participating seniors and 36.2% of the seniors cared for by the participating caregivers. Overall, 93% seniors and 71% caregivers reported taking an active or collaborative role in the decision-making process. The median decisional conflict score was 23/100 for seniors and 30/100 for caregivers. The median decision regret score was the same for both (10/100). Qualitative analysis revealed that the housing decision was influenced by factors such as seniors' health and safety concerns and caregivers' burden of care. Some caregivers felt sad and guilty when the decision did not match the senior's preference. CONCLUSION: The actual housing decision made for seniors frequently did not match their preferred housing option. Advanced care planning regarding housing and better decision support are needed for these difficult decisions.