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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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

This paper reports on the feasibility and preliminary effects of a decision aid (DA) about female fertility preservation (FP). We conducted a pilot multicentre randomized controlled trial of women with breast cancer aged 18–40 who were randomized to brochures or the DA. Over 18 months, 62 women were eligible, of which 42 were invited by their healthcare provider (74%) to participate in the study. A total of 36 women signed up for participation and 26 (72%) were randomized to brochures (n = 13) or the DA (n = 13). In both groups, many women (87%) read the brochures and eight women used all available brochures. In the intervention group, 7/13 women logged in to the DA. Women who received brochures had slightly less decisional conflict, whereas knowledge improved in both groups. Our results indicate that both brochures about FP and a detailed DA have beneficial effects with regard to knowledge, but the DA seemed to introduce slightly more decisional conflict (DC) than the brochures. Although we encountered challenges with recruitment, our design and measurements seem feasible and the effects of the information materials seem promising, hence justifying conducting a larger study. [ABSTRACT FROM PUBLISHER]

We conducted a mixed-methods knowledge synthesis to assess the effectiveness of interventions to improve caregivers' involvement in decision making with seniors, and to describe caregivers' experiences of decision making in the absence of interventions. We analyzed forty-nine qualitative, fourteen quantitative, and three mixed-methods studies. The qualitative studies indicated that caregivers had unmet needs for information, discussions of values and needs, and decision support, which led to negative sentiments after decision making. Our results indicate that there have been insufficient quantitative evaluations of interventions to involve caregivers in decision making with seniors and that the evaluations that do exist found few clinically significant effects. Elements of usual care that received positive evaluations were the availability of a decision coach and a supportive decision-making environment. Additional rigorously evaluated interventions are needed to help caregivers be more involved in decision making with seniors. [ABSTRACT FROM AUTHOR]

Background: Participant recruitment in clinical trials is often challenging. Building partnerships with healthcare organizations during proposal development facilitates access to the community and may influence its subsequent organization participation and participant recruitment. We aimed to assess how pre-engaging directors of homecare organizations influenced organization participation in a subsequent trial. Findings: Repeated cross-sectional study prior to a cluster randomized controlled trial involving 33 eligible Health and Social Services Centres (HSSCs). During proposal development, we asked eligible HSSC directors in a randomized order about their willingness to participate in our trial, if funded. In the pre-engagement phase, 23 directors were contacted until we met sample size requirements (n ≥ 16); 19 of whom wrote letters of intent. Once funded, we contacted all 33 eligible HSSC directors in a randomized order to enroll them. Of the 19 directors who provided letters of intent, 15 agreed to participate (79 %); of the four who did not provide letters, one agreed to participate (25 %); and of the ten who had not been approached in the pre-engagement phase, two agreed to participate (20 %). Fisher exact tests indicated that providing letters of intent was associated with subsequent participation (p = 0.003). Conclusions: Given that significantly more HSSCs directors who signed letters of intent followed through with study participation, pre-engagement with trial sites during proposal development appears to improve recruitment. [ABSTRACT FROM AUTHOR]

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 R2 =.48, α =.87, ICC =.95; women with fertility problems R2 =.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. [ABSTRACT FROM AUTHOR]

The article presents the research that investigates the experiences of women related to the fertility preservation (FP) in the Netherlands. The topics discussed include the gonadotoxic implications of cancer treatment, the counseling consultation they received on FP, and their recommendations to standardized information and communication provision with medical facilities and clinicians.

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objectives: To improve information provision about fertility preservation for breast cancer patients in the Netherlands, a web-based Decision Aid (DA) with additional values clarification exercise was developed according to the International Patient Decision Aid Standards criteria. This study reports on development of the DA. Methods: Development consisted of four stages: (I) development of a draft DA, (II) acceptability of the draft DA to patients, (III) understanding (knowledge) in healthy populations, (IV) acceptability of the revised DA among patients and physicians. The study population consisted of 185 participants: 20 patients, 17 physicians and 148 healthy volunteers. Results: The draft DA was considered to be relevant and understandable by patients, physicians and healthy volunteers. The values clarification exercise needed adaptation in explanation and navigation, which was done after stage II. Knowledge scores improved by 18% for lower educated women (from 4.1 (41%) to 5.9 (59%) correct answers), and by 34% for higher educated women after viewing the website (from 3.9 (39%) to 7.3 (73%) correct answers). Design of the DA was evaluated to be clear, but not always very appealing. Conclusions: The DA was regarded as a relevant source of information that seemed coherent and understandable. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

To gain insight into healthcare professionals' (HCPs') perspectives on the use of outcome data in consultations and to understand which aggregated outcomes patients find important. This study had a mixed-methods design and consisted of two steps: 1. HCPs (n = 11) were interviewed about the use of outcome data in consultations. Thematic analysis was used for data analysis. 2. Patients with prostate cancer, lung cancer, and inflammatory bowel disease (IBD) completed questionnaires (n = 283) to identify important outcomes. Descriptive statistics were used for data analysis. HCPs indicated that aggregated outcome data are not routinely used in consultations. They pointed out various barriers to using outcome data, e.g., low response rates of PROMs, and suggested actions to address these barriers, including training of HCPs in outcome data usage. Patients rated the majority of aggregated outcomes as important, although preferences differed between the studied health conditions. Both HCPs and patients underscored the importance of discussing outcome data in consultations. Nevertheless, HCPs encountered several barriers to using outcome data. Furthermore, patients with different health conditions have somewhat different information needs. The study identified several actionable steps to enhance the collection and application of outcome data in consultations. • Aggregated outcome data are not routinely used in consultations • Patients rate the majority of aggregated outcomes as important information • Patients with different health conditions have somewhat different information needs • Healthcare professionals experience barriers to use outcome data in consultations • Multiple actions to increase use of outcome data in consultations were identified [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objective: To develop a web-based decision aid (DA) for the treatment of lower urinary tract symptoms due to benign prostatic hyperplasia (LUTS/BPH).Methods: From February-September 2014 we performed a four-stage development method: 1: Two-round Delphi consensus method among urologists, 2: Identifying patients' needs and expectations, 3: Development of DA content and structure, 4: Usability testing with LUTS/BPH patients.Results: 1 (N=15): Dutch urologists reached consensus on 61% of the statements concerning users' criteria, decision options, structure, and medical content. 2 (N=24): Consensus was reached in 69% on statements concerning the need for improvement of information provision, the need for DA development and that the DA should clarify patients' preferences. 3: DA development based on results from stage 1 and stage 2. 4 (N=10): Pros of the DA were clear information provision, systematic design and easy to read and re-read.Conclusion: A LUTS/BPH DA containing VCEs(**) was developed in cooperation with urologists and patients following a structured 4 stage method and was stated to be well accepted.Practice Implications: This method can be adopted for the development of DAs to support other medical decision issues. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]