Evaluating patient participation in value-based healthcare: Current state and lessons learned.

INTRODUCTION: Value-based healthcare (VBHC) focusses on increasing value for patients. Hospitals aim to implement VBHC via value improvement (VI) teams for medical conditions. To determine the patient's perspective on value, collective patient participation is important in these teams. We therefore evaluated the current state of patient participation in VI teams and share lessons learned. METHODS: This mixed-methods study was conducted at seven collaborating hospitals in the Netherlands. A questionnaire (the public and patient engagement evaluation tool) was tailored to the study's context, completed by VI team members (n = 147 from 76 different VI teams) and analysed with descriptive statistics. In addition, 30 semistructured interviews were held with VI team members and analysed through thematic analysis. Data were collected between February 2022 and January 2023 and were triangulated by mapping the quantitative results to the interview themes. RESULTS: Thirty-eight of the 76 included VI teams reported using a form of patient participation. Many respondents (71%) indicated a lack of a clear strategy and goal for patient participation. Multiple VI team members believed that specific knowledge and skills are required for patients to participate in a VI team, but this led to concerns regarding the representativeness of participating patients. Furthermore, while patients indicated that they experienced some level of hierarchy, they also stated that they did not feel restricted hereby. Lastly, patients were satisfied with their participation and felt like equal VI team members (100%), but they did mention a lack of feedback from the VI team on their input. CONCLUSION: The results imply the lack of full implementation of patient participation within VI teams. Guidelines should be developed that provide information on how to include a representative group of patients, which methods to use, how to evaluate the impact of patient participation, and how to give feedback to participating patients. PATIENT AND PUBLIC CONTRIBUTION: Two patient advisors were part of the research team and attended the research team meetings. They were involved as research partners in all phases of the study, including drafting the protocol (e.g., drafting interview guides and selecting the measurement instrument), interpreting the results and writing this article.

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.

Factors associated with shared decision making among primary care physicians: Findings from a multicentre cross-sectional study.

BACKGROUND: Despite growing recognition that shared decision making (SDM) is central for patient-centred primary care, adoption by physicians remains limited in routine practice. OBJECTIVE: To examine the characteristics of physicians, patients and consultations associated with primary care physicians' SDM behaviours during routine care. METHODS: A multicentre cross-sectional survey study was conducted with 114 unique patient-physician dyads recruited from 17 primary care clinics in Quebec and Ontario, Canada. Physicians' SDM behaviours were assessed with the 12-item OPTION scale scored by third observers using audio-recordings of consultations. Independent variables included 21 physician, patient and consultation characteristics. We assessed factors associated with OPTION scores using multivariate linear regression models. RESULTS: On the OPTION scale, where higher scores indicated greater SDM behaviours, physicians earned an overall mean score of 25.7±9.8 of 100. In the final adjusted regression model, higher OPTION scores were associated with physicians' social participation (involvement in one committee ß=5.75, P=.04; involvement in two or more committees ß=7.74, P=.01), patients' status as employed (ß=6.48, P=.02), clinically significant decisional conflict in patients (ß=7.15, P=.002) and a longer duration of consultations (ß=0.23, P=.002). CONCLUSION: Physicians' social participation, patients' employment status and decisional conflict and the duration of consultations were associated with primary care physicians' SDM behaviours in routine care. These factors should be considered when designing strategies to implement SDM and promote more patient-centred care in primary care.

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

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

Impact of home care versus alternative locations of care on elder health outcomes: an overview of systematic reviews.

BACKGROUND: Many elders struggle with the decision to remain at home or to move to an alternative location of care. A person's location of care can influence health and wellbeing. Healthcare organizations and policy makers are increasingly challenged to better support elders' dwelling and health care needs. A summary of the evidence that examines home care compared to other care locations can inform decision making. We surveyed and summarized the evidence evaluating the impact of home care versus alternative locations of care on elder health outcomes. METHODS: We conducted an overview of systematic reviews. Data sources included MEDLINE, the Cochrane Library, EMBASE, and CINAHL. Eligible reviews included adults 65+ years, elder home care, alternative care locations, and elder health outcomes. Two independent reviewers screened citations. We extracted data and appraised review quality using the Assessing the Methodological Quality of Systematic Reviews (AMSTAR) checklist. Results were synthesized narratively. RESULTS: The search yielded 2575 citations, of which 19 systematic reviews were eligible. Three hundred and forty studies with 271,660 participants were synthesized across the systematic reviews. The categories of comparisons included: home with support versus independent living at home (n = 11 reviews), home care versus institutional care (n = 3 reviews), and rehabilitation at home versus conventional rehabilitation services (n = 7 reviews). Two reviews had data relevant to two categories. Most reviews favoured home with support to independent living at home. Findings comparing home care to institutional care were mixed. Most reviews found no differences in health outcomes between rehabilitation at home versus conventional rehabilitation services. Systematic review quality was moderate, with a median AMSTAR score of 6 (range 4 - 10 out of 11). CONCLUSIONS: The evidence on the impact of home care compared to alternative care locations on elder health outcomes is heterogeneous. Our findings support positive health impacts of home support interventions for community dwelling elders compared to independent living at home. There is insufficient evidence to determine the impact of alternative care locations on elders' health. Additional research targeting housing and care options for the elderly is needed.

Women's experiences with information provision and deciding about fertility preservation in the Netherlands: 'satisfaction in general, but unmet needs'.

OBJECTIVE: It is not well-known how women receiving counselling consultation about fertility preservation (FP) in the Netherlands perceive the information provision about and referral for FP in the oncology setting. The aim of this study was to qualitatively explore women's experiences with the (process of) information provision about the gonadotoxic effects of cancer treatment and about FP and the decision-making process and to obtain their recommendation for improvements. METHODS: Semi-structured interviews with female patients with cancer who had received a counselling consultation on FP (at 18-40 years of age). RESULTS: Thirty-four interviews were held (response rate 64%). Information provision was considered to be important. Overall, women were satisfied with the timing and the content of the information, but women were less positive about the need to be assertive to get information, and the multiplicity of decisions and actions to be carried out in a very short time frame. CONCLUSIONS: Information provision on gonadotoxic effects of cancer treatment and about FP was overall deemed sufficient, timely and important. Women recommended standardization of the information provision, improvement of communication among clinicians and medical centres, and availability of FP-specific patient information materials to improve future information provision processes.

Decision aids that support decisions about prenatal testing for Down syndrome: an environmental scan.

BACKGROUND: Prenatal screening tests for Down syndrome (DS) are routine in many developed countries and new tests are rapidly becoming available. Decisions about prenatal screening are increasingly complex with each successive test, and pregnant women need information about risks and benefits as well as clarity about their values. Decision aids (DAs) can help healthcare providers support women in this decision. Using an environmental scan, we aimed to identify publicly available DAs focusing on prenatal screening/diagnosis for Down syndrome that provide effective support for decision making. METHODS: Data sources searched were the Decision Aids Library Inventory (DALI) of the Ottawa Patient Decision Aids Research Group at the Ottawa Health Research Institute; Google searches on the internet; professional organizations, academic institutions and other experts in the field; and references in existing systematic reviews on DAs. Eligible DAs targeted pregnant women, focused on prenatal screening and/or diagnosis, applied to tests for fetal abnormalities or aneuploidies, and were in French, English, Spanish or Portuguese. Pairs of reviewers independently identified eligible DAs and extracted characteristics including the presence of practical decision support tools and features to aid comprehension. They then performed quality assessment using the 16 minimum standards established by the International Patient Decision Aids Standards (IPDASi v4.0). RESULTS: Of 543 potentially eligible DAs (512 in DALI, 27 from experts, and four on the internet), 23 were eligible and 20 were available for data extraction. DAs were developed from 1996 to 2013 in six countries (UK, USA, Canada, Australia, Sweden, and France). Five DAs were for prenatal screening, three for prenatal diagnosis and 12 for both). Eight contained values clarification methods (personal worksheets). The 20 DAs scored a median of 10/16 (range 6-15) on the 16 IPDAS minimum standards. DISCUSSION: None of the 20 included DAs met all 16 IPDAS minimum standards, and few included practical decision support tools or aids to comprehension. CONCLUSIONS: Our results indicate there is a need for DAs that effectively support decision making regarding prenatal testing for Down syndrome, especially in light of the recently available non-invasive prenatal screening tests.

Validation of a Dutch Version of the Reproductive Concerns Scale (RCS) in Three Populations of Women.

We investigated the psychometric properties of a Dutch version of the Reproductive Concerns Scale (RCS). Questionnaires (N = 515) were administered to 90 women with breast cancer, 227 women with fertility problems, and 198 healthy controls. Principal axis factor analysis suggested a one-factor structure with 11 items (breast cancer patients R(2) =.48, α =.87, ICC =.95; women with fertility problems R(2) =.45, α =.89, ICC =.86). Women with fertility problems reported the most concerns (M = 21.8, SD = 9.6), followed by breast cancer patients (M = 14.8, SD = 10.0) and healthy controls (M = 6.4, SD = 7.0). Theoretically related constructs were correlated to the RCS (.33 < r >.73). The RCS seems to be a valid tool for assessing women's reproductive concerns.

Values clarification in a decision aid about fertility preservation: does it add to information provision?

BACKGROUND: We aimed to evaluate the effect of a decision aid (DA) with information only compared to a DA with values clarification exercise (VCE), and to study the role of personality and information seeking style in DA-use, decisional conflict (DC) and knowledge. METHODS: Two scenario-based experiments were conducted with two different groups of healthy female participants. Dependent measures were: DC, knowledge, and DA-use (time spent, pages viewed, VCE used). Respondents were randomized between a DA with information only (VCE-) and a DA with information plus a VCE(VCE+) (experiment 1), or between information only (VCE-), information plus VCE without referral to VCE(VCE+), and information plus a VCE with specific referral to the VCE, requesting participants to use the VCE(VCE++) (experiment 2). In experiment 2 we additionally measured personality (neuroticism/conscientiousness) and information seeking style (monitoring/blunting). RESULTS: Experiment 1. There were no differences in DC, knowledge or DA-use between VCE- (n=70) and VCE+ (n=70). Both DAs lead to a mean gain in knowledge from 39% at baseline to 73% after viewing the DA. Within VCE+, VCE-users (n=32, 46%) reported less DC compared to non-users. Since there was no difference in DC between VCE- and VCE+, this is likely an effect of VCE-use in a self-selected group, and not of the VCE per se. Experiment 2. There were no differences in DC or knowledge between VCE- (n=65), VCE+ (n=66), VCE++ (n=66). In all groups, knowledge increased on average from 42% at baseline to 72% after viewing the DA. Blunters viewed fewer DA-pages (R=0.38, p<.001). More neurotic women were less certain (R=0.18, p<.01) and felt less supported in decision making (R=0.15, p<.05); conscientious women felt more certain (R=-0.15, p<.05) and had more knowledge after viewing the DA (R=0.15, p<.05). CONCLUSIONS: Both DAs lead to increased knowledge in healthy populations making hypothetical decisions, and use of the VCE did not improve knowledge or DC. Personality characteristics were associated to some extent with DA-use, information seeking styles with aspects of DC. More research is needed to make clear recommendations regarding the need for tailoring of information provision to personality characteristics, and to assess the effect of VCE use in actual patients.

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.

Seeking clinical consensus on risk assessment in anatomical infravesical obstruction of boys - A Delphi study.

INTRODUCTION: Infravesical obstruction (IO) is a common urological condition in young boys. Patients may present with various signs and symptoms at different ages, with severity depending to a large extent on the degree of obstruction. Consensus concerning accurate and objective modalities to diagnose IO and to differentiate between an anatomical or functional cause is still lacking. OBJECTIVE: This study aimed to reach consensus on the diagnostic determinants that are important to assess the likelihood of anatomical IO in boys and differentiate between an anatomical or functional cause. STUDY DESIGN: A Delphi method was used to establish a list of diagnostic determinants that can be utilized in order to diagnose anatomical IO in boys. An international and interdisciplinary panel of experts was recruited to reach consensus using three sequential rounds of electronic questionnaires. Data were collected using the online survey platform Qualtrics. Rounds one and two were used to define diagnostic determinants. Round three was used to stratify key determinants according to age. RESULTS: All rounds received a response rate of 100%. In round one, consensus was achieved on 44 of a total 79 items. In round two, consensus was achieved on 19 of a total 51 items. Round three identified a variation in key determinants per age group. DISCUSSION: To create an effective tool for assessing IO in boys, key determinants identified in this study will need to be validated in a prospective clinical trial. Due to a large number of determinants and sections, this will not be a trivial task. In addition, since a Delphi study is based on expert opinion, any consensus achieved remains subjective. Diagnostic determinants identified in this study will need to be validated using prospective clinical data. Artificial Intelligence provides techniques for uncovering complex associations that cannot easily be reduced to equations. It may therefore play a pivotal role in the future development of robust IO risk assessment tools. CONCLUSION: An international group of experts agreed that a risk assessment tool for IO in boys would be beneficial for both clinical practice and research purposes. Using a Delphi study methodology, consensus was reached on a set of diagnostic determinants that were considered important to assess the likelihood of IO and differentiate between an anatomical or functional cause. This study paves the way for further research on IO in boys. Eventually this could lead to an accurate and standardized assessment tool for IO.

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.

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.

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.

A Delphi consensus study among patients and clinicians in the Netherlands on the procedure of informing young breast cancer patients about Fertility Preservation.

BACKGROUND: The aim of this study was to obtain feedback from, and reach consensus among different experts who are or have been involved in information provision about FP, regarding the (procedure of) information provision about Fertility Preservation (FP) and use of a web-based decision aid (DA) about FP to create optimal conditions for the implementation of the DA-website, as we prepare to implement a DA about FP in the Netherlands. MATERIAL AND METHODS: A two round Delphi study in which experts (patients and clinicians) rated their (dis)agreement with a list of statements (Rounds 1, 2), and additional online forum to discuss dissensus (Round 3). We assessed opinions about FP, web-based DAs, and about the procedure of informing patients. Answer categories ranged from 1 (totally disagree) to 5 (totally agree). Consensus was considered significant when at least 80% of the experts scored either the lowest or the highest two categories. RESULTS: Experts reached rapid consensus on all five statements about the use of a DA (5/5; 100%), and all eight statements about which patients should be offered information about FP (8/8; 100%). However opinions about FP (4/11 statements; 36%), and procedural aspects such as who should inform the patient (6/10 statements; 60%) and when (3/10 statements; 30%) remained for discussion in round 3. In the online discussion some level of agreement was reached for these statements after all. CONCLUSION: It was deemed important that FP options exist. Every eligible patient should receive at least some (general) information about FP, soon after diagnosis. Detailed information should be provided by a fertility expert at a later moment. Exact timing and amount of information should be adjusted to patient's needs and situational context. A DA-website can offer a fair contribution to this.

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.

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.

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.

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.