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Amber E van der Meij,1 Olga C Damman,1 Ellen Uiters,2 Danielle RM Timmermans1,31Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Public and Occupational Health, Amsterdam Public Health Research Institute, Amsterdam, The Netherlands; 2National Institute for Public Health and the Environment (RIVM), Centre for Nutrition, Prevention and Health Services, Bilthoven, The Netherlands; 3National Institute for Public Health and the Environment (RIVM), Bilthoven, The NetherlandsBackground: In cervical screening programs, women typically receive information leaflets to support their decision about participation. However, these leaflets are often based on what experts consider important benefits and harms of screening and not what women themselves consider important to know.Objective: To identify which benefits and harms women consider important for making a decision about cervical screening.Design: Cross-sectional study.Setting and participants: Women from the Dutch target group of cervical screening (N=248; 30–60 years), recruited through an online access panel.Main variables studied: Perceived importance of different benefits and harms of cervical screening, assessed through two rating items (“How important is the information about [this harm/benefit] for your decision?” and “For me it is a [benefit/harm] that participating in the screening program leads to [the benefit/harm]”), and one ranking item (“Rank the information according to their importance for your own choice”).Results: Women overall considered the benefits of cervical screening more important than the harms or disadvantages. The most important harm according to women was the chance of false positive results (M=4.88; SD=1.75). Differences between those with lower and higher numeracy/health literacy were found regarding several aspects, e.g. for the chance of false positive results, the chance of false negative results, the chance of overtreatment.Discussion and conclusion: The results suggest that leaflets could include more explicit information about false positive results.Keywords: informed decision making, cervical screening, risk communication, lay perspective

OBJECTIVE: To develop a Consumer Quality Index (CQ-index) Breast Care instrument that measures quality of care from the perspective of patients with (suspicion of) breast cancer. METHODS: To develop a pilot questionnaire, three focus group discussions with breast cancer patients were performed. The questionnaire was sent to 1197 patients. We performed psychometric and descriptive analyses to optimise the new instrument. RESULTS: Focus group discussions revealed nine main themes related to breast care quality. Psychometric analyses resulted in 15 reliable scales. The final instrument consisted of 152 items, of which 118 items regarded patients' experiences. The aspect with the highest need for quality improvement was informing patients about a second opinion. CONCLUSION: The CQ-index Breast Care (CQI-BC) instrument provides a good starting point for further research on the quality of breast care seen from the perspective of patients. The newly developed instrument can be used by different stakeholders for future quality monitoring. [ABSTRACT FROM AUTHOR]

Background: Evidence is lacking on the most effective values clarification methods (VCMs) in patient decision aids (PtDAs). We tested the effects of an adaptive conjoint analysis (ACA)-based VCM compared with a ranking-based VCM and no VCM on several decision-related outcomes, with the decisional conflict and its subscale "perceived values clarity" as primary outcomes., Design: Online experimental study with 3 conditions: no VCM versus ranking-based VCM versus ACA -based VCM ( N = 282; M age = 63.11 y, s = 12.12), with the latter 2 conditions including attributes important for a lung cancer treatment decision. We assessed 1) decisional conflict, 2) perceived values clarity (decisional conflict subscale), 3) perceived cognitive load, 4) anticipated regret, 5) ambivalence, 6) preparedness for decision making, 7) hypothetical treatment preference, and 8) values congruence (proxy). We performed analysis of covariance and linear regression. Age and level of deliberation were included as potential moderators, and we controlled for subjective numeracy (covariate). We exploratively tested the moderating effects of subjective numeracy and health literacy (without covariates)., Results: We found no significant effect of type of VCM on overall decisional conflict or perceived values clarity. Age had a moderating effect: in younger participants, no VCM (v. ranking-based VCM) led to more values clarity, while in older participants, a ranking-based VCM (v. no VCM) led to more values clarity. Completing the ACA-based VCM, compared with no VCM, resulted in more values congruence., Limitations: The hypothetical choice situation might have induced lower levels of cognitive/affective involvement in the decision., Conclusions: This study found mixed effects of an ACA-based VCM. It did not decrease decisional conflict or increase perceived values clarity, yet it did improve values congruence., Implications: Completion of an ACA-based VCM in a PtDA may increase values congruence., Highlights: An adaptive conjoint analysis or a ranking-based values clarification method did not decrease analog patients' decisional conflict nor did it increase their perceived values clarity.In younger participants, no VCM (v. ranking-based VCM) led to more values clarity, while in older participants, a ranking-based VCM (v. no VCM) led to more values clarity.An adaptive conjoint analysis task for values clarification resulted in more values congruence., Competing Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Financial support for this study was provided entirely by a grant from the Dutch Cancer Society (KWF). The funding agreement ensured the authors’ independence in designing the study, interpreting the data, writing, and publishing the report.

Introduction: This study aimed to investigate how shared decision-making (SDM) and the use of different types of outcome information are applied in routine care management for people with multiple sclerosis (MS) in an academic outpatient clinic., Methods: This qualitative study used the following: (a) observations of clinical encounters (N = 23) between patients and healthcare professionals (HCPs), (b) interviews with those patients (N = 17) and (c) interviews with those HCPs (N = 7). HCPs were not trained in SDM before the study. Audio recordings were transcribed literally. Transcriptions were analysed using qualitative thematic analysis., Results: Outcome information was hardly discussed with patients, apart from clinical outcome information at an individual level, such as MRI or lab results. This use of clinical outcome information did not automatically lead to a process of SDM. HCPs tended to implicitly present choices to patients after signalling and discussing 'problems'. In the interviews, patients indicated that they tended to consent to the advice given by HCPs and to prefer not too much change in treatment plans. However, they also emphasized the importance of being informed about available options with benefits and harms. We observed multiple discussions about patients' preferences, especially related to patients' experiences and priorities., Conclusions: Overall, SDM and the use of different types of outcome information did not seem to be enacted in routine care management for people with MS, mostly because choices were not explicitly mentioned or discussed. However, discussions about patients' experiences and priorities did take place. Training HCPs further and developing patient information seem reasonable steps to proceed., Patient or Public Contribution: People with MS contributed as research participants and provided us with their experiences in interviews. Furthermore, representatives of two patient organizations contributed to the study by reviewing the interview protocol for people with MS., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

Background: If communicated adequately, numerical decision-relevant information can support informed and shared decision making. Visual formats are recommended, but which format supports patients depending on their health literacy (HL) levels for specific decisions is unclear., Study Aim: The aim of this study is to investigate: 1) the effect of survival rates and side-effects presentation formats on comprehension and 'feeling informed'; 2) differential effects among women with higher/lower HL, with adjuvant systemic breast cancer therapy as case example., Methods: Two online experiments among women from the Dutch population without a history of breast cancer were conducted. Experiment 1 had a 3 (survival rate format: text block-bar graph-icon array) x 2 (HL: low-high) between-subjects design. Experiment 2 had a 5 (side-effects format: no probability information-probability information in numbers with or without a visualisation-probability information in numbers with or without a visualisation accompanied by a description of the side-effects) x 2 (HL: low-high) design. Primary outcomes were comprehension and feeling informed (Experiment 2 only). Formats were previously designed in co-creation with patients., Results: In Experiment 1, presentation format did not affect gist or verbatim comprehension. Higher HL was associated with higher gist comprehension. Experiment 2 showed an interaction between presentation format and HL on 'feeling informed'. When provided with visualised probability information without a description of the side-effects, women with lower HL felt better informed than women with higher HL., Conclusion: Visual formats did not enhance comprehension of survival rate information beyond a well-designed text block format. However, none of the formats could overcome HL differences. When designing decision-relevant information, visualisations might not necessarily provide an advantage over structured numerical information for both patients with lower and higher HL. However, a deeper understanding of presenting side-effect information is warranted., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 van Strien-Knippenberg et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Objective: To investigate the effect of an active choice (AC) intervention based on creating risk and choice awareness-versus a passive choice (PC) control group-on intentions and commitment to cardiovascular disease (CVD) risk-reducing behavior., Methods: Adults aged 50-70 (n = 743) without CVD history participated in this web-based randomized controlled trial. The AC intervention included presentation of a hypothetical CVD risk in a heart age format, information about CVD risk and choice options, and a values clarification exercise. The PC group received a hypothetical absolute numerical CVD risk and brief information and advice about lifestyle and medication. Key outcomes were reported degree of active choice, intention strength, and commitment to adopt risk-reducing behavior., Results: More AC compared to PC participants opted for lifestyle change (OR = 2.86, 95%CI:1.51;5.44), or lifestyle change and medication use (OR = 2.78, 95%CI:1.42;5.46), than 'no change'. No differences were found for intention strength. AC participants made a more active choice than PC participants (β = 0.09, 95%CI:0.01;0.16), which was sequentially mediated by cognitive risk perception and negative affect. AC participants also reported higher commitment to CVD risk-reducing behavior (β = 0.32, 95%CI:0.04;0.60), mediated by reported degree of active choice., Conclusions: Fostering active choices increased intentions and commitment towards CVD risk-reducing behavior. Increased cognitive risk perception and negative affect were shown to mediate the effect of the intervention on degree of active choice, which in turn mediated the effect on commitment. Future research should determine whether fostering active choice also improves risk-reducing behaviors in individuals at increased CVD risk in real-life settings., Trial Registration: ClinicalTrials.gov: NCT05142280. Prospectively registered., Competing Interests: The authors have declared that no competing interests exists, (Copyright: © 2024 Landais et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Purpose: To assess information and communication priorities of patients and healthcare professionals in Shared Decision Making about adjuvant systemic treatment of primary breast cancer and identify key decision-relevant information accordingly., Methods: Patients (N = 122) and professionals working with breast cancer patients (N = 118), of whom 38 were nurse practitioners and 32 nurses, were recruited using convenience sampling, and surveyed about information/communication aspects key to decision-making, using ranking assignments. We further posed a simple open question, questions about receiving population-based statistics versus personalized statistics concerning treatment outcomes, and their attitude and experience concerning Shared Decision Making. Data were analyzed using descriptive analysis and a qualitative analysis., Results: Both patients and professionals prioritized information about treatment outcomes (i.e., survival, recurrence) as key decision-relevant information for patients. Patients prioritized information about relatively severe treatment side-effects and late effects (e.g., blood clot, stroke), whilst professionals prioritized information about effects that occur relatively often (e.g., hair loss, fatigue). Patients specifically wanted to know if the benefit of treatment is worth the negative impact. Both groups prioritized personalized statistics over population-based statistics., Conclusions: Some differences between patients and professionals were found in information and communication priorities, specifically related to the different side-effects. It seems worthwhile to precisely address these side-effects in Shared Decision Making concerning adjuvant systemic treatment. Furthermore, it seems important to deliberate together on the question if expected benefit of treatment is worth the potential negative impact for the individual patient., Competing Interests: Declaration of competing interest Domino Determann was working at ‘PATIENT+’ at the time of the study. PATIENT+ is part of the larger consortium; it is a company that provides the patient decision support tool for breast cancer adjuvant therapy that was studied (https://patientplus.info/). The other authors have no competing interests to declare., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Objective: Decision-making about breast cancer screening requires balanced and understandable information that takes prior beliefs of screening invitees into account., Methods: In qualitative interviews with 22 Dutch women who were invited for screening for the first time (49-52 years of age, varying health literacy levels), we gained insight in their beliefs on breast cancer and breast cancer screening, and explored how the current screening information matched these beliefs., Results: Breast cancer was perceived as an unpredictable, severe, and uncontrollable disease. Women considered screening as self-evident and an important mean to gain some control over breast cancer. Information on benefits of screening was in line with women's prior beliefs and confirmed women's main reasons to participate. Information about false-positive outcomes, overtreatment, and false negative outcomes did not correspond to women's prior beliefs and this information was generally not considered relevant for decision-making. Preferences for additional information merely concerned practical information on the screening procedure., Conclusion: Complex information on the harms of screening does not match women's beliefs and is not taken into account in their decision-making., Practice Implications: Information regarding breast cancer screening could be further aligned to prior beliefs by taking into account values, filling knowledge gaps and correct misconceptions., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier B.V. All rights reserved.)

Objectives: Shared decision-making (SDM) is a trending topic in athlete health care; however, little is known about its use in a sports context. This study aimed to measure knowledge and self-perceived practice of SDM among healthcare professionals working with athletes. This study evaluates SDM attitudes and preferences and explores how healthcare professionals perceive the factors influencing SDM., Methods: A web-based cross-sectional survey with open-ended and closed-ended questions., Results: Our survey was completed by 131 healthcare professionals. The majority (63.6%) reported to prefer SDM and to be confident in their SDM skills (81.1%). Despite this inclination and confidence, only one in four clinicians reported consistent practice of SDM when feasible. Additionally, most clinicians lacked SDM knowledge. The barriers perceived by healthcare professionals included time constraints (17.6%), limited patient knowledge (17.6%), limited patient motivation (13.5%) and language barriers (16.2%). Importantly, two-thirds of the participants believed that SDM in athlete health care differs from SDM in non-athletes due to the high-pressure environment, the tension between performance and health, and the involvement of multiple stakeholders with potentially conflicting interests., Conclusions: Although healthcare professionals preferred SDM, they did not fully understand nor routinely practice it. Most healthcare professionals perceive SDM in athlete health care to differ from SDM in the general population. Therefore, to inform the implementation of SDM in athlete health care, future research is crucial to understand better what makes practising SDM unique in this setting., Competing Interests: Competing interests: SN, HPD, OD and AF declare they have no competing interests. EV is Editor-in-Chief of BMJ Open SEM., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Maternity care increasingly aims to achieve Shared Decision-making (SDM), yet seemingly not to the benefit of clients with low health literacy (HL). We developed an SDM training for healthcare professionals (HCPs) and a conversation aid to support HL-sensitive SDM in maternity care., Methods: The training and conversation aid were based on previous needs assessments and expert consultation, and were developed in co-creation with clients ( n  = 15) and HCPs ( n  = 7). Usability, acceptability and comprehension of the conversation aid were tested among new clients ( n  = 14) and HCPs ( n  = 6). Acceptability of the training was tested among midwifery students ( n  = 5)., Results: In the co-creation sessions, clients reported to expect that their midwife becomes acquainted with their general values, priorities and daily context. Clients also emphasized wanting to be supported in their preferred decisional role. User test interviews showed that clients and HCPs were positive towards using the conversation aid, but also apprehensive about the time it required. The user test of the training showed that more attention was needed for recognizing and adapting information provision to clients' HL level., Conclusion and Innovation: The newly developed conversation aid and training have potential to support HCPs and clients in HL-sensitive SDM., Competing Interests: The authors declare the following financial interests/personal relationships which may be considered as potential competing interests. Laxsini Murugesu reports financial support was provided by Netherlands Organization for Health Research and Development., (© 2024 The Authors.)

Background: Risk-based breast cancer (BC) screening raises new questions regarding information provision and risk communication. This study aimed to: 1) investigate women's beliefs and knowledge (i.e., mental models) regarding BC risk and (risk-based) BC screening in view of implications for information development; 2) develop novel informational materials to communicate the screening result in risk-based BC screening, including risk visualizations of both quantitative and qualitative information, from a Human-Centered Design perspective., Methods: Phase 1: Interviews were conducted (n = 15, 40-50 years, 5 lower health literate) on women's beliefs about BC risk and (risk-based) BC screening. Phase 2: In three participatory design sessions, women (n = 4-6 across sessions, 40-50 years, 2-3 lower health literate) made assignments and created and evaluated visualizations of risk information central to the screening result. Prototypes were evaluated in two additional sessions (n = 2, 54-62 years, 0-1 lower health literate). Phase 3: Experts (n = 5) and women (n = 9, 40-74 years) evaluated the resulting materials. Two other experts were consulted throughout the development process to ensure that the content of the information materials was accurate. Interviews were transcribed literally and analysed using qualitative thematic analysis, focusing on implications for information development. Notes, assignments and materials from the participatory design sessions were summarized and main themes were identified., Results: Women in both interviews and design sessions were positive about risk-based BC screening, especially because personal risk factors would be taken into account. However, they emphasized that the rationale of risk-based screening and classification into a risk category should be clearly stated and visualized, especially for higher- and lower-risk categories (which may cause anxiety or feelings of unfairness due to a lower screening frequency). Women wanted to know their personal risk, preferably visualized in an icon array, and wanted advice on risk reduction and breast self-examination. However, most risk factors were considered modifiable by women, and the risk factor breast density was not known, implying that information should emphasize that BC risk depends on multiple factors, including breast density., Conclusions: The information materials, including risk visualizations of both quantitative and qualitative information, developed from a Human-Centered Design perspective and a mental model approach, were positively evaluated by the target group., (© 2024. The Author(s).)

Background: Shared decision-making has become of increased importance in choosing the most suitable treatment strategy for early rectal cancer, however, clinical decision-making is still primarily based on physicians' perspectives. Balancing quality of life and oncological outcomes is difficult, and guidance on patients' involvement in this subject in early rectal cancer is limited. Therefore, this study aimed to explore preferences and priorities of patients as well as physicians' perspectives in treatment for early rectal cancer., Methods: In this qualitative study, semi-structured interviews were performed with early rectal cancer patients (n = 10) and healthcare providers (n = 10). Participants were asked which factors influenced their preferences and how important these factors were. Thematic analyses were performed. In addition, participants were asked to rank the discussed factors according to importance to gain additional insights., Results: Patients addressed the following relevant factors: the risk of an ostomy, risk of poor bowel function and treatment related complications. Healthcare providers emphasized oncological outcomes as tumour recurrence, risk of an ostomy and poor bowel function. Patients perceived absolute risks of adverse outcome to be lower than healthcare providers and were quite willing undergo organ preservation to achieve a better prospect of quality of life., Conclusion: Patients' preferences in treatment of early rectal cancer vary between patients and frequently differ from assumptions of preferences by healthcare providers. To optimize future shared decision-making, healthcare providers should be aware of these differences and should invite patients to explore and address their priorities more explicitly during consultation. Factors deemed important by both physicians and patients should be expressed during consultation to decide on a tailored treatment strategy., (© 2023. The Author(s).)

Background: Shared decision-making (SDM) in maternity care is challenging when clients have insufficient health literacy (HL) skills. This study gained insight in how professionals apply HL-sensitive SDM in Dutch maternity care and their needs for support therein., Methods: Maternity care professionals (n = 30) completed a survey on SDM and the role of HL. Midwives (n = 13) were observed during simulated conversations discussing pain relief options and interviewed afterwards. The client-actors were instructed to portrait specific inadequate HL skills. Observation items focused on adapting communication to HL, and SDM (OPTION-5)., Results: In the survey, professionals indicated experiencing most challenges when estimating clients' information comprehension. Observations showed that most midwives created choice awareness and informed clients about options, whereas exploring preferences and actual decision-making together with clients were observed less frequently. Their perceived HL-related obstacles and needs for support related to clients' information comprehension. In the interviews, midwives reported putting much effort into explaining available options in maternity care, but also that decisions about pain relief are often postponed until the moment of labour., Conclusion: Professionals' self-reported needs focus on clients' information comprehension. However, observations indicate that it is not the stage of informing, but rather value clarification and actual decision-making that need improvement in HL-sensitive SDM., (© 2023. BioMed Central Ltd., part of Springer Nature.)

Background: Intrinsic values and priorities influence decision-making and are, therefore, important to consider explicitly in intervention development. Although health is generally considered an important value, individuals often make unhealthy choices, indicating a values disconnect., Study Aim: To investigate how becoming aware of a disconnect between the value assigned to health and the effort devoted to health is related to intentions and commitment for behavioural change and physical activity among inactive adults., Methods: We performed a secondary exploratory analysis on previously collected data. The intervention included a values exercise based on the Disconnected Values Model (DVM) that made disconnected values explicit to participants in two study arms. We compared participants with a disconnect ( n  = 138) with participants without a disconnect ( n  = 101) regarding intentions and commitment for behavioural change and physical activity and sitting time 2-4 weeks follow-up. Logistic and linear regression analyses were performed to analyse the data., Results: Between-group differences were found for the intention to devote more effort to health (OR = 3.75; 95%CI: 2.05; 6.86) and for the intention to become more physically active (OR = 2.21; 95%CI: 1.10; 4.46), indicating that significantly more participants with a disconnect were motivated to change, compared to participants without a disconnect. No between-group differences were found for commitment, intention strength, follow-up physical activity and sitting time., Conclusion: Making explicit a disconnect regarding health in an active choice intervention was associated with intentions to become more physically active. Still, it did not translate in significant behaviour change at 2-4 weeks follow-up., Trial Registration: ClinicalTrials.gov: NCT04973813. Retrospectively registered., Trial Registration: ClinicalTrials.gov identifier: NCT04973813.., Competing Interests: No potential conflict of interest was reported by the author(s)., (© 2023 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.)

Background: Pregnant women should be able to make autonomous and meaningful decisions about prenatal screening for fetal abnormalities. It remains largely unclear which circumstances facilitate or hinder such a decision-making process., Objective: To investigate what conditions Dutch pregnant women and professional experts consider important for autonomous reproductive decision-making in prenatal screening for fetal abnormalities, and the extent to which, according to women, those conditions are met in practice., Methods: A mixed methods study was conducted in the Netherlands in 2016-2017. A conceptual model was used to interview professional experts (n = 16) and pregnant women (n = 19). Thematic analysis was performed to identify important conditions. Subsequently, a questionnaire assessed the perceived importance of those conditions and the extent to which these were met, in the experience of pregnant women (n = 200)., Results: Professional experts stressed the importance of information provision, and emphasized a rational decision-making model. Pregnant women differed in what information they felt was needed, and this depended on the screening decision made. Questionnaire findings showed that women prioritized discussion and consensus with partners. Information about test accuracy and miscarriage risk of invasive follow-up testing was also considered important. Two key conditions were not adequately met, in the experience of women: (1) having information about miscarriage risk; (2) not being directed by health professionals in decision-making., Conclusion: According to women, discussion and consensus with partners was considered a highly important condition for an autonomous and meaningful decision-making process. Access to information about safety of testing and ensuring that women are not being directed in their decision-making by health professionals seem to be areas for improvement in prenatal care practice., (Copyright © 2023 The Author(s). Published by Elsevier Ltd.. All rights reserved.)

To (1) explore how women visually attend to a hospital report card (HRC), (2) explore whether visual attention of younger and older women (patients and non-patients) differs. Eye-tracking study with a short survey. Participants ( N = 37) were provided with a hypothetical realistic HRC. Total dwell times and fixation counts were measured while participants viewed the information. Overall, no differences existed between younger and older women. Visual attention to the hospital of choice (vs not of choice) and to indicators perceived as most important (vs least important) did not differ. However, women with higher health literacy looked longer at the HRC than women with lower health literacy. Also, per fixation, older patients (vs younger patients) looked longer at the hospital of choice and at indicators perceived most important. Pre-existing conceptions of what information is relevant might result in more in-depth information processing among older patients than younger patients. In general, differences in level of health literacy, rather than (chronological) age, seem to be relevant to take into account when designing and/or updating HRCs.

Multiple sclerosis (MS) is a chronic and progressive neurological disorder impacting physical, cognitive, and psychosocial health. The disease course, severity, and presence of symptoms differ within and between persons over time and are unpredictable. Given the preference-sensitive nature of many key decisions to be made, and the increasing numbers of disease-modifying therapies, shared decision-making (SDM) with patients seems to be key in offering optimum care and outcomes for people suffering from MS. In this paper, we describe our perspective on how to achieve SDM in patients with MS, following key SDM-elements from established SDM-frameworks. As for deliberation in the clinical encounter, SDM communication training of professionals and feedback on their current performance are key aspects, as well as encouraging patients to participate. Concerning information for patients, it is important to provide balanced, evidence-based information about the benefits and the harms of different treatment options, including the option of surveillance only. At the same time, attention is needed for the optimal dosage of that information, given the symptoms of cognitive dysfunction and fatigue among MS-patients, and the uncertainties they have to cope with. Finally, for broader communication, a system is required that assures patient preferences are actually implemented by multidisciplinary MS-teams. As SDM is also being implemented in many countries within the context of value-based health care, we consider the systematic use of outcome information, such as patient-reported outcome measures (PROMs) and Patient Decision Aids, as an opportunity to achieve SDM., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2022 Ubbink, Damman and de Jong.)

Objective: Patients with advanced diseases and frail older adults often face decisions regarding life-prolonging treatment. Our aim was to provide an overview of the feasibility and effectiveness of tools that support communication between healthcare professionals and patients regarding decisions on life-prolonging treatments in hospital settings., Design: Systematic review: We searched PubMed, CINAHL, PsycINFO, Embase, Cochrane Library and Google Scholar (2009-2019) to identify studies that reported feasibility or effectiveness of tools that support communication about life-prolonging treatments in adult patients with advanced diseases or frail older adults in hospital settings. The Mixed Methods Appraisal Tool was used for quality appraisal of the included studies., Results: Seven studies were included, all involving patients with advanced cancer. The overall methodological quality of the included studies was moderate to high. Five studies described question prompt lists (QPLs), either as a stand-alone tool or as part of a multifaceted programme; two studies described decision aids (DAs). All QPLs and one DA were considered feasible by both patients with advanced cancer and healthcare professionals. Two studies reported on the effectiveness of QPL use, revealing a decrease in patient anxiety and an increase in cues for discussing end-of-life care with physicians. The effectiveness of one DA was reported; it led to more understanding of the treatment in patients., Conclusions: Use of QPLs or DAs, as a single intervention or part of a programme, may help in communicating about treatment options with patients, which is an important precondition for making informed decisions., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: To support patients in shared decision-making about treatment options, patient decision aids (PtDAs) usually provide benefit/harm information and value clarification methods (VCMs). Recently, personalized risk information from prediction models is also being integrated into PtDAs. This study aimed to design decision-relevant information (i.e., personalized survival rates, harm information and VCMs) about adjuvant breast cancer treatment in cocreation with patients, in a way that suits their needs and is easily understandable., Methods: Three cocreation sessions with breast cancer patients (N = 7-10; of whom N = 5 low health literate) were performed. Participants completed creative assignments and evaluated prototypes of benefit/harm information and VCMs. Prototypes were further explored through user testing with patients (N = 10) and healthcare providers (N = 10). The researchers interpreted the collected data, for example, creative and homework assignments, and participants' presentations, to identify key themes. User tests were transcribed and analysed using ATLAS.ti to assess the understanding of the prototypes., Results: Important information needs were: (a) need for overview/structure of information directly after diagnosis and; (b) need for transparent benefit/harm information for all treatment options, including detailed harm information. Regarding VCMs, patients stressed the importance of a summary/conclusion. A bar graph seemed the most appropriate way of displaying personalized survival rates; the impact of most other formats was perceived as too distressful. The concept of 'personalization' was not understood by multiple patients., Conclusions: A PtDA about adjuvant breast cancer treatment should provide patients with an overview of the steps and treatment options, with layers for detailed information. Transparent information about the likelihood of benefits and harm should be provided. Given the current lack of information on the likelihood of side effects/late effects, efforts should be made to collect and share these data with patients. Further quantitative studies are needed to validate the results and to investigate how the concept of 'personalization' can be communicated., Patient or Public Contribution: Ten breast cancer patients participated in three cocreation sessions to develop decision-relevant information. Subsequent user testing included 10 patients. The Dutch Breast Cancer Association (BVN) was involved as an advisor in the general study design., (© 2022 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Dutch initiatives targeting shared decision-making (SDM) are still growing, supported by the government, the Federation of Patients' Organisations, professional bodies and healthcare insurers. The large majority of patients prefers the SDM model. The Dutch are working hard to realise improvement in the application of SDM in daily clinical practice, resulting in glimpses of success with objectified improvement on observed behavior. Nevertheless, the culture shift is still ongoing. Large-scale uptake of SDM behavior is still a challenge. We haven't yet fully reached the patients' needs, given disappointing research data on patients' experiences and professional behavior. In all Dutch implementation projects, early adopters, believers or higher-educated persons have been overrepresented, while patients with limited health literacy have been underrepresented. This is a huge problem as 25% of the Dutch adult population have limited health literacy. To further enhance SDM there are issues to be addressed: We need to make physicians conscious about their limited application of SDM in daily practice, especially regarding preference and decision talk. We need to reward clinicians for the extra work that comes with SDM. We need to be inclusive to patients with limited health literacy, who are less often actually involved in decision-making and at the same time more likely to regret their chosen treatment compared to patients with higher health literacy., (Copyright © 2022. Published by Elsevier GmbH.)

Background: Promoting active (i.e., conscious, autonomous, informed, and value-congruent) choices may improve the effectiveness of physical activity interventions. This web-based four-arm experimental study investigated the effect of promoting an active versus passive choice regarding physical activity on behavioural and psychological outcomes (e.g., physical activity intentions and behaviours, autonomy, commitment) among physically inactive adults., Methods: Dutch inactive adults were randomized into four groups: physical activity guideline only (control group G), guideline & information (GI), guideline & active choice (GA), or guideline & active choice & action planning (GA +). GA and GA + participants were stimulated to make an active choice by weighing advantages and disadvantages of physical activity, considering personal values, and identifying barriers. GA + participants additionally completed action/coping planning exercises. Passive choice groups G and GI did not receive exercises. Self-reported behavioural outcomes were assessed by a questionnaire pre-intervention (T0, n = 564) and at 2-4 weeks follow-up (T2, n = 493). Psychological outcomes were assessed post-intervention (T1, n = 564) and at follow-up. Regression analyses compared the outcomes of groups GI, GA and GA + with group G. We also conducted sensitivity analyses and a process evaluation., Results: Although promoting an active choice process (i.e., interventions GA and GA +) did not improve intention (T1) or physical activity (T2 versus T0), GA + participants reported higher commitment at T1 (β = 0.44;95%CI:0.04;0.84) and more frequently perceived an increase in physical activity between T0 and T2 (β = 2.61;95%CI:1.44;7.72). GA participants also made a more active choice at T1 (β = 0.16;95%CI:0.04;0.27). The GA and GA + intervention did not significantly increase the remaining outcomes. GI participants reported higher intention strength (β = 0.64;95%CI:0.15;1.12), autonomy (β = 0.50;95%CI:0.05;0.95), and commitment (β = 0.39;95%CI:0.04;0.74), and made a more active choice at T1 (β = 0.13;95%CI:0.02;0.24). Interestingly, gender and health condition modified the effect on several outcomes. The GA + intervention was somewhat more effective in women. The process evaluation showed that participants varied in how they perceived the intervention., Conclusions: There is no convincing evidence of a beneficial effect of an active versus passive choice intervention on physical activity intentions and behaviours among inactive adults. Further research should determine whether and how active choice interventions that are gender-sensitized and consider health conditions can effectively increase physical activity., Trial Registration: ClinicalTrials.gov: NCT04973813 . Retrospectively registered., (© 2022. The Author(s).)

Background: Hospital report cards (HRCs) are usually presented in a textual and factual format, likely hampering information processing., Objective: This study aimed to investigate the effects of audiovisual and narrative information in HRCs on user responses, and to test differences between older and younger women., Design: A 2 (modality [textual vs. audiovisual]) × 3 (narration style [factual vs. process narrative vs. experience narrative]) online experiment was conducted. Information about breast cancer care was used as a case example. Age (younger [<65] vs. older [≥65]) was included as a potential effect modifier., Setting and Participants: A total of 631 disease-naïve women (M age  = 56.06) completed an online survey. The outcomes were perceived cognitive load, satisfaction, comprehension, information recall and decisional conflict. Data were analysed using AN(C)OVAs., Results: Audiovisual (vs. textual) information resulted in higher information satisfaction across age groups, but was associated with lower comprehension in older women. An experience narrative (vs. factual information) increased satisfaction with attractiveness and emotional support of the information only in older women. A three-way interaction effect was found, suggesting that older women were most satisfied with the comprehensibility of audiovisual factual or textual process narrative information. Younger women were most satisfied with the comprehensibility of audiovisual process narrative or textual factual information., Discussion and Conclusion: Audiovisual and narrative information in an HRC showed beneficial effects on satisfaction measures. In particular, audiovisual information could be incorporated into HRCs to increase satisfaction with information., Public Contribution: Lay persons helped in optimizing the visuals used in the stimulus materials by checking for clarity., (© 2021 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Background: Office workers spend a significant part of their workday sitting. Interventions that aim to reduce sedentary behaviour and increase physical activity might be more effective if greater attention is paid to individual perspectives that influence behavioural choices, including beliefs and values. This study aimed to gain insight into office workers' perspectives on physical activity and sedentary behaviour., Methods: Sixteen Dutch office workers (50% female) from different professions participated in semi-structured face-to-face interviews in March 2019. To facilitate the interviews, participants received a sensitizing booklet one week before the interview. The booklet aimed to trigger them to reflect on their physical activity and sedentary behaviour and on their values in life. All interviews were audiotaped, transcribed verbatim and coded following codebook thematic analysis., Results: Six themes were identified: 1) beliefs about health effects are specific regarding physical activity, but superficial regarding sedentary behaviour; 2) in addition to 'health' as a value, other values are also given priority; 3) motivations to engage in physical activity mainly stem from prioritizing the value 'health', reflected by a desire to both achieve positive short/mid-term outcomes and to prevent long-term negative outcomes; 4) attitudes towards physical inactivity and sedentary behaviour are diverse and depend on individual values and previous experiences; 5) perceived barriers depend on internal and external factors; 6) supporting factors are related to support and information in the social and physical environment., Conclusions: The great value that office workers attach to health is reflected in their motivations and attitudes regarding physical activity. Increasing office workers' knowledge of the health risks of prolonged sitting may therefore increase their motivation to sit less. Although 'health' is considered important, other values, including social and work-related values, are sometimes prioritized. We conclude that interventions that aim to reduce sedentary behaviour and increase physical activity among office workers could be improved by informing about health effects of sedentary behaviour and short/mid-term benefits of physical activity, including mental health benefits. Moreover, interventions could frame physical activity as congruent with values and support value-congruent choices. Finally, the work environment could support physical activity and interruption of sedentary behaviour., (© 2022. The Author(s).)

Objective: To determine whether communicating personalised statin therapy-effects obtained by prognostic algorithm leads to lower decisional conflict associated with statin use in patients with stable cardiovascular disease (CVD) compared with standard (non-personalised) therapy-effects., Design: Hypothesis-blinded, three-armed randomised controlled trial SETTING AND PARTICIPANTS: 303 statin users with stable CVD enrolled in a cohort INTERVENTION: Participants were randomised in a 1:1:1 ratio to standard practice (control-group) or one of two intervention arms. Intervention arms received standard practice plus (1) a personalised health profile , (2) educational videos and (3) a structured telephone consultation. Intervention arms received personalised estimates of prognostic changes associated with both discontinuation of current statin and intensification to the most potent statin type and dose (ie, atorvastatin 80 mg). Intervention arms differed in how these changes were expressed: either change in individual 10-year absolute CVD risk (iAR-group) or CVD-free life-expectancy (iLE-group) calculated with the SMART-REACH model (http://U-Prevent.com)., Outcome: Primary outcome was patient decisional conflict score (DCS) after 1 month. The score varies from 0 (no conflict) to 100 (high conflict). Secondary outcomes were collected at 1 or 6 months: DCS, quality of life, illness perception, patient activation, patient perception of statin efficacy and shared decision-making, self-reported statin adherence, understanding of statin-therapy, post-randomisation low-density lipoprotein cholesterol level and physician opinion of the intervention. Outcomes are reported as median (25th- 75th percentile)., Results: Decisional conflict differed between the intervention arms: median control 27 (20-43), iAR-group 22 (11-30; p-value vs control 0.001) and iLE-group 25 (10-31; p-value vs control 0.021). No differences in secondary outcomes were observed., Conclusion: In patients with clinically manifest CVD, providing personalised estimations of treatment-effects resulted in a small but significant decrease in decisional conflict after 1 month. The results support the use of personalised predictions for supporting decision-making., Trial Registration: NTR6227/NL6080., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Shared decision-making requires adequate functional health literacy (HL) skills from clients to understand information, as well as interactive and critical HL skills to obtain, appraise and apply information about available options. This study aimed to explore women's HL skills and needs for support regarding shared decision-making in maternity care. In-depth interviews were held among women in Dutch maternity care who scored low ( n = 10) and high ( n = 13) on basic health literacy screening test(s). HL skills and perceived needs for support were identified through thematic analysis. Women appeared to be highly engaged in the decision-making process. They mentioned searching and selecting general information about pregnancy and labor, constructing their preferences based on their own pre-existing knowledge and experiences and by discussions with partners and significant others. However, women with low basic skills and primigravida perceived difficulties in finding reliable information, understanding probabilistic information, constructing preferences based on benefit/harm information and preparing for consultations. Women also emphasized dealing with uncertainties, changing circumstances of pregnancy and labor, and emotions. Maternity care professionals could further support clients by guiding them towards reliable information. To facilitate participation in decision-making, preparing women for consultations (e.g., agenda setting) and supporting them in a timely manner to understand benefit/harm information seem important.

Background: Risk information in patient decision aids (PDAs) is often difficult for older patients to process. Providing audiovisual and narrative information may enhance the understanding and use of health-related information. We studied the effects on patients' information processing and use of audiovisual and narrative information of an early-stage non-small-cell lung cancer treatment decision aid explaining surgery and stereotactic ablative radiotherapy. We further investigated differences between older and younger patients., Methods: We conducted a 2 (modality: textual v. audiovisual) × 2 (narration style: factual v. narrative) online experiment among cancer patients and survivors ( N = 305; M age = 62.42, SD = 11.68 y). Age was included as a potential modifier: younger (<65 y) versus older (≥65 y) age. We assessed 1) perceived cognitive load, 2) satisfaction with information, 3) comprehension, 4) information recall, and 5) decisional conflict. Analysis of variance was used for data analysis., Results: Irrespective of patient age, audiovisual information (compared with textual information) led to lower perceived cognitive load, higher satisfaction with information, and lower decisional conflict (subscale Effective Decision). Narrative information (compared with factual information) led to reduced decisional conflict (subscale Uncertainty) but only in younger patients. Combining audiovisual information with factual information also resulted in lower perceived cognitive load in younger patients as compared with older patients., Limitations: Patients who actually face the decision, especially older patients, might be more motivated to process our decision-aid information than the present study participants who responded to a hypothetical situation online., Conclusions: Providing participants with audiovisual information, irrespective of their age, improved their processing and use of information in a decision aid. Narratives did not clearly benefit information processing.

Background: The rising prevalence of cardiometabolic diseases (CMD) calls for effective prevention programs. Self-assessment of CMD risk, for example through an online risk score (ORS), might induce risk reducing behavior. However, the concept of disease risk is often difficult for people to understand. Therefore, the study objective was to assess the impact of communicating an individualized CMD risk score through an ORS on perceived risk and to identify risk factors and demographic characteristics associated with risk perception among high-risk participants of a prevention program for CMD., Methods: A cross-sectional analysis of baseline data from a randomized controlled trial conducted in a primary care setting. Seven thousand five hundred forty-seven individuals aged 45-70 years without recorded CMD, hypertension or hypercholesterolemia participated. The main outcome measures were: 1) differences in cognitive and affective risk perception between the intervention group - who used an ORS and received an individualized CMD risk score- and the control group who answered questions about CMD risk, but did not receive an individualized CMD risk score; 2) risk factors and demographic characteristics associated with risk perception., Results: No differences were found in cognitive and affective risk perception between the intervention and control group and risk perception was on average low, even among high-risk participants. A positive family history for diabetes type 2 (β0.56, CI95% 0.39-0.73) and cardiovascular disease (β0.28, CI95% 0.13-0.43), BMI ≥25 (β0.27, CI95% 0.12-0.43), high waist circumference (β0.25, CI95% 0.02-0.48) and physical inactivity (β0.30, CI95% 0.16-0.45) were positively associated with cognitive CMD risk perception in high-risk participants. No other risk factors or demographic characteristics were associated with risk perception., Conclusions: Communicating an individualized CMD risk score did not affect risk perception. A mismatch was found between calculated risk and self-perceived risk in high-risk participants. Family history and BMI seem to affect the level of CMD risk perception more than risk factors such as sex, age and smoking. A dialogue about personal CMD risk between patients and health care professionals might optimize the effect of the provided risk information., Trial Registration: Dutch trial Register number NTR4277, registered 26th Nov 2013.

Background: Choice architecture interventions, which subtly change the environment in which individuals make decisions, can be used to promote behavior change. This systematic review aimed to summarize studies on micro-environmental choice architecture interventions that encouraged physical activity or discouraged sedentary behavior in adults, and to describe the effectiveness of those interventions on these behaviors - and on related intentions or health outcomes - in presence of the intervention and after removal of the intervention (i.e. post-intervention, regardless of the time elapsed)., Methods: We systematically searched PubMed, Embase, PsycINFO and the Cochrane Library for (quasi) experimental studies published up to December 2019 that evaluated the effect of choice architecture interventions on physical activity and sedentary behavior, as well as on intentions and health outcomes related to physical activity/sedentary behavior. Studies that combined choice architecture techniques with other behavior change techniques were excluded. All studies were screened for eligibility, relevant data was extracted and two independent reviewers assessed the methodological quality using the QualSyst tool., Results: Of the 9609 records initially identified, 88 studies met our eligibility criteria. Most studies (n = 70) were of high methodologic quality. Eighty-six studies targeted physical activity, predominantly stair use, whereas two studies targeted sedentary behavior, and one targeted both behaviors. Intervention techniques identified were prompting (n = 53), message framing (n = 24), social comparison (n = 12), feedback (n = 8), default change (n = 1) and anchoring (n = 1). In presence of the intervention, 68% of the studies reported an effect of choice architecture on behavior, whereas after removal of the intervention only 47% of the studies reported a significant effect. For all choice architecture techniques identified, except for message framing, the majority of studies reported a significant effect on behavioral intentions or behavior in presence of the intervention., Conclusions: The results suggest that prompting can effectively encourage stair use in adults, especially in presence of a prompt. The effectiveness of the choice architecture techniques social influence, feedback, default change and anchoring cannot be assessed based on this review. More (controlled) studies are needed to assess the (sustained) effectiveness of choice architecture interventions on sedentary behavior and other types of physical activity than stair use.

Background: The recent emphasis on value-based health care (VBHC) is thought to provide new opportunities for shared decision-making (SDM) in the Netherlands, especially when using patient-reported outcome measures (PROMs) in routine medical encounters. It is still largely unclear about how PROMs could be linked to SDM and what we expect from clinicians in this respect., Aim: To describe approaches and lessons learned in the fields of SDM and VBHC implementation that converge in using PROMs in medical encounters., Approach: Based on input from three Dutch forerunner case examples and available evidence about SDM and VBHC, we describe barriers and facilitators regarding the use of PROMs and SDM in the medical encounter. Barriers and facilitators were structured according to a conversational model that included monitoring and managing, team talk, option talk, choice talk, and decision talk. Key lessons learned and recommendations were synthesized., Results: The use of individual, N = 1 PROMs scores in the medical encounter has been largely achieved in the forerunner projects. Conversation on monitoring and managing is relatively well implemented, and option talk to some extent, unlike team talk, and decision talk. Aggregated PROMs information describing outcomes of treatment options seemed to be scarcely used. Experienced barriers largely corresponded to what is known from the literature, eg, perceived lack of time and lack of tools summarizing the options. Some concerns were identified about increasing health care consumption as a result of using PROMs and SDM in the medical encounter., Conclusion: Successful implementation of SDM within VBHC initiatives may not be self-evident, even though individual, N = 1 PROMs scores are being used in the medical encounter. Education and staff resources on meso and macro levels may facilitate the more time-consuming SDM aspects. It seems fruitful to especially target team talk and choice talk in redesigning clinical pathways., (© 2019 The Authors. Journal of Evaluation in Clinical Practice published by John Wiley & Sons Ltd.)

Background: The use of patient-reported outcomes measures (PROMs), such as quality of life or symptoms like pain or fatigue, is increasingly embraced within patient-centred care and shared decision making., Objectives: To investigate: (a) how patients and health professionals think about using PROMs during routine medical consultations; (b) for which purpose(s), patients and health professionals want to use PROMs during those consultations; and (c) how patients interpret PROMs information presented in various formats. People with Parkinson's disease and their health professionals served as case example., Methods: We performed semi-structured interviews with patients (N = 13) and professionals (N = 7 neurologists; N = 7 physiotherapists). We also used a survey in which patients (N = 115) were shown six figures displaying different information types. Presentation formats of this information varied (line/bar graphs). Interpretation by patients, perceived usefulness of information, attitude towards using information during routine medical consultations and (hypothetical) decisions were assessed., Findings: Patients and professionals were generally positive about using PROMs during medical consultations. Professionals stressed the opportunity to monitor changes in individual PROMs over time. Patients were primarily positive about aggregated PROMs to make treatment decisions. This information was also most often interpreted correctly, especially when presented through a line graph (90.1% correct). Professionals thought patients should take the initiative in discussing PROMs, whereas patients thought professionals should do so., Conclusion/discussion: When used in routine medical consultations, PROMs seem to have potential to support shared decision making and facilitate patient-professional communication. However, training seems needed for both patients and professionals to facilitate actual discussion and proper interpretation., (© 2019 The Authors Health Expectations published by John Wiley & Sons Ltd.)

Objective: To study how comprehension of cardiovascular disease (CVD) risk is influenced by: (1) infographics about qualitative risk information, with/without risk numbers; (2) which qualitative risk dimension is emphasized; (3) heart age vs. traditional risk format., Methods: For aim 1, a 2 (infographics versus text) x 2 (risk number versus no risk number) between-subjects design was used. For aim 2, three pieces of information were tested within-subjects. Aim 3 used a simple comparison group. Participants (45-65 yrs old) were recruited through an online access panel; low educated people were oversampled. They received hypothetical risk information (20%/61yrs). Primary outcomes: recall, risk appraisals, subjective/objective risk comprehension., Secondary Outcomes: behavioral intentions, information evaluations., Results: Infographics of qualitative risk dimensions negatively affected recall, subjective risk comprehension and information evaluations. No effect of type of risk dimension was found on risk perception. Heart age influenced recall, comprehension, evaluations and affective risk appraisals., Conclusion: Infographics of hypothetical CVD risk information had detrimental effects on measures related to risk perception/comprehension, but effects were mainly seen in undereducated participants. Heart age influenced perceptions/comprehension of hypothetical risk in a way that seemed to support understanding., Practice Implications: Heart age seems a fruitful risk communication approach in disease risk calculators., (Copyright © 2018 Elsevier B.V. All rights reserved.)

Background: Medication nonadherence poses a serious and a hard-to-tackle problem for many chronic diseases. Electronic health (eHealth) apps that foster patient engagement and shared decision making (SDM) may be a novel approach to improve medication adherence., Objective: The aim of this study was to investigate the perspective of health care professionals regarding a newly developed digital app aimed to improve medication adherence. Familial hypercholesterolemia (FH) was chosen as a case example., Methods: A Web-based prototype of the eHealth app-MIK-was codesigned with patients and health care professionals. After user tests with patients, we performed semistructured interviews and user tests with 12 physicians from 6 different hospitals to examine how the functionalities offered by MIK could assist physicians in their consultation and how they could be integrated into daily clinical practice. Qualitative thematic analysis was used to identify themes that covered the physicians' evaluations., Results: On the basis of the interview data, 3 themes were identified, which were (1) perceived impact on patient-physician collaboration; (2) perceived impact on the patient's understanding and self-management regarding medication adherence; and (3) perceived impact on clinical decisions and workflow., Conclusions: The eHealth app MIK seems to have the potential to improve the consultation between the patient and the physician in terms of collaboration and patient engagement. The impact of eHealth apps based on the concept of SDM for improving medication-taking behavior and clinical outcomes is yet to be evaluated. Insights will be useful for further development of eHealth apps aimed at improving self-management by means of patient engagement and SDM., (©Karen Thomson, Corline Brouwers, Olga C Damman, Martine C de Bruijne, Danielle RM Timmermans, Marijke Melles. Originally published in JMIR Human Factors (http://humanfactors.jmir.org), 20.02.2018.)

Background: Disease risk calculators are increasingly web-based, but previous studies have shown that risk information often poses problems for lay users., Objective: To examine how lay people understand the result derived from an online cardiometabolic risk calculator., Design: A qualitative study was performed, using the risk calculator in the Dutch National Prevention Program for cardiometabolic diseases. The study consisted of three parts: (i) attention: completion of the risk calculator while an eye tracker registered eye movements; (ii) recall: completion of a recall task; and (iii) interpretation: participation in a semi-structured interview., Setting and Participants: We recruited people from the target population through an advertisement in a local newspaper; 16 people participated in the study, which took place in our university laboratory., Results: Eye-tracking data showed that participants looked most extensively at numerical risk information. Percentages were recalled well, whereas natural frequencies and verbal labels were remembered less well. Five qualitative themes were derived from the interview data: (i) numerical information does not really sink in; (ii) the verbal categorical label made no real impact on people; (iii) people relied heavily on existing knowledge and beliefs; (iv) people zoomed in on risk factors, especially family history of diseases; and (v) people often compared their situation to that of their peers., Discussion and Conclusion: Although people paid attention to and recalled the risk information to a certain extent, they seemed to have difficulty in properly using this information for interpreting their risk., (© 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.)

Currently, shared decision making (SDM) is on the agenda among target patient representative groups, policy makers and professional bodies. Although the International Conference for Shared Decision Making (ISDM) 2011 generated a positive boost, hesitation was also felt among Dutch clinicians, who are challenged by many new tasks. No hesitation is seen among the majority of patients, opting mostly for the SDM model. We haven't reached these patients' needs fully yet, given disappointing research data on patients' experiences and professional behaviour. There is plenty of room for improvement in daily practice, for which many best practices are being designed and increasingly implemented, such as national campaigns to empower patients, central governance of patient decision aids that are developed along clinical practice guidelines, postgraduate training, collaborative learning and system changes, and merging goal setting and SDM in complex care. This is explicitly supported by the Dutch government, the Ministry of Health, patient groups, professional bodies and health insurers. The culture shift in the minds and hearts of patients and clinicians has started but is still ongoing. Enthusiasm for this way of working could be undermined if SDM is defined and implemented in a simplistic, dogmatic manner leading to irresponsible transferring of the professionals' uncertainty, responsibility, and decisional stress to patients., (Copyright © 2017. Published by Elsevier GmbH.)

Background: The Internet is increasingly being used to provide patients with information about the quality of care of different health care providers. Although online comparative health care information is widely available internationally, and patients have been shown to be interested in this information, its effect on patients' decision making is still limited., Objective: This study aimed to explore patients' preferences regarding information presentation and their values concerning tailored comparative health care information. Meeting patients' information presentation needs might increase the perceived relevance and use of the information., Methods: A total of 38 people participated in 4 focus groups. Comparative health care information about hip and knee replacement surgery was used as a case example. One part of the interview focused on patients' information presentation preferences, whereas the other part focused on patients' values of tailored information (ie, showing reviews of patients with comparable demographics). The qualitative data were transcribed verbatim and analyzed using the constant comparative method., Results: The following themes were deduced from the transcripts: number of health care providers to be presented, order in which providers are presented, relevancy of tailoring patient reviews, and concerns about tailoring. Participants' preferences differed concerning how many and in which order health care providers must be presented. Most participants had no interest in patient reviews that were shown for specific subgroups based on age, gender, or ethnicity. Concerns of tailoring were related to the representativeness of results and the complexity of information. A need for information about the medical specialist when choosing a hospital was stressed by several participants., Conclusions: The preferences for how comparative health care information should be presented differ between people. "Information on demand" and information about the medical specialist might be promising ways to increase the relevancy and use of online comparative health care information. Future research should focus on how different groups of people use comparative health care information for different health care choices in real life., Competing Interests: Conflicts of Interest: None declared., (©Nicolien C Zwijnenberg, Michelle Hendriks, Evelien Bloemendal, Olga C Damman, Judith D de Jong, Diana MJ Delnoij, Jany JD Rademakers. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 28.11.2016.)

Objectives: Surgery and stereotactic ablative radiotherapy (SABR) are both curative treatment options for patients with stage I non-small cell lung cancer (NSCLC). Shared decision making (SDM) has been advocated in this patient group. This study explored clinician decision making in relation to the stated treatment preferences of patients., Methods: In a previous study, we conducted a binary choice experiment with hypothetical cases among 126 clinicians. Secondary data analysis was performed using multilevel logistic regression models, in which random differences between clinicians' decisions were taken into account. We analyzed the influence of patient- and clinician-related characteristics, and uncertainty as experienced by clinicians about their recommendation on the clinician's decision (either in line with the patient's preference or not)., Results: Significant interactions were observed between patient- and clinician-related characteristics, indicating that patient preferences were selectively taken into account, depending on clinicians' specialty, their views about the comparability of cancer-related outcomes following surgery and SABR, and the degree of uncertainty about the treatment recommendation., Conclusions: Our findings suggest that SDM for stage I NSCLC care is largely influenced by how clinicians weigh available scientific evidence., Practice Implications: Clinicians should involve lung cancer patients more and ask for their preferences in making treatment recommendations., (Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.)

Study Objectives: We aimed to investigate how different presentation formats influence comprehension and use of comparative performance information (CPI) among consumers., Methods: An experimental between-subjects and within-subjects design with manipulations of CPI presentation formats. We enrolled both consumers with lower socioeconomic status (SES)/cognitive skills and consumers with higher SES/cognitive skills, recruited through an online access panel. Respondents received fictitious CPI and completed questions about interpretation and information use. Between subjects, we tested (1) displaying an overall performance score (yes/no); (2) displaying a small number of quality indicators (5 vs 9); and (3) displaying different types of evaluative symbols (star ratings, coloured dots and word icons vs numbers and bar graphs). Within subjects, we tested the effect of a reduced number of healthcare providers (5 vs 20). Data were analysed using descriptive analysis, analyses of variance and paired-sampled t tests., Results: A total of 902 (43%) respondents participated. Displaying an overall performance score and the use of coloured dots and word icons particularly enhanced consumer understanding. Importantly, respondents provided with coloured dots most often correctly selected the top three healthcare providers (84.3%), compared with word icons (76.6% correct), star ratings (70.6% correct), numbers (62.0%) and bars (54.2%) when viewing performance scores of 20 providers. Furthermore, a reduced number of healthcare providers appeared to support consumers, for example, when provided with 20 providers, 69.5% correctly selected the top three, compared with 80.2% with five providers., Discussion: Particular presentation formats enhanced consumer understanding of CPI, most importantly the use of overall performance scores, word icons and coloured dots, and a reduced number of providers displayed. Public report efforts should use these formats to maximise impact on consumers., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.)

Objectives: To identify the barriers from the perspective of consumers with low health literacy in using risk information as provided in cardiometabolic risk assessments., Design: A qualitative thematic approach using cognitive interviews was employed., Methods: We performed interviews with 23 people with low health literacy/health numeracy, who were recruited through (1) several organisations and snowball sampling and (2) an online access panel. Participants completed the risk test of the Dutch national cardiometabolic risk assessment and viewed the personalized information about their risk. They were asked to answer probing questions about different parts of the information. The qualitative data were analysed by identifying main themes related to barriers in using the information, using a descriptive thematic approach., Results: The four main themes identified were as follows: (1) People did not fully accept the risk message, partly because numerical information had ambiguous meaning; (2) people lacked an adequate framework for understanding their risk; (3) the purpose and setting of the risk assessment was unclear; and (4) current information tells nothing new: A need for more specific risk information., Conclusions: The main barriers were that the current presentation seemed to provoke undervaluation of the risk number and that texts throughout the test, for example about cardiometabolic diseases, did not match people's existing knowledge, failing to provide an adequate framework for understanding cardiometabolic risk. Our findings have implications for the design of disease risk information, for example that alternative forms of communication should be explored that provide more intuitive meaning of the risk in terms of good versus bad., Statement of Contribution: What is already known on this subject? Online disease risk assessments have become widely available internationally. People with low SES and health literacy tend to participate less in health screening. Risk information is difficult to understand, yet little research has been carried out among people with low health literacy. What does this study add? People with low health literacy do not optimally use risk information in an online cardiometabolic risk assessment. The texts provided in the cardiometabolic risk assessment do not suit to their existing knowledge. The typical risk communication (numbers, bar graph, verbal label) seems to provoke undervaluation of risk., (© 2015 The British Psychological Society.)

Background: Surgery and stereotactic ablative radiotherapy (SABR) are both curative treatment options for patients with a stage I non-small cell lung cancer (NSCLC). Consequently, there is growing interest in studying the role of patients in treatment decision making. We studied how patients with stage I NSCLC perceived shared decision making (SDM) in general, and how they viewed different aspects of SDM., Methods: A sequential mixed methods design was used, consisting of qualitative interviews (N=11), as well as a survey study (N=76) focusing on different SDM-related aspects. Participants were interviewed to understand their own experience with treatment decision making. In the survey study, patients rated the importance of 20 aspects of shared decision making that were identified during interviews. Descriptive analysis and explorative factor analysis were performed., Results: We assessed six qualitative themes covering SDM aspects that were determined by patients to be important. The survey identified four SDM-related factors with sufficient internal consistency, namely (1) 'guidance by clinician' (α=.741), (2) 'conduct of clinician' (α=.774); (3) 'preparation for treatment decision making' (α=.864); and (4) 'active role of patient in treatment decision making' (α=.782). Of these, clinician guidance was rated as most important by patients (M=3.61; SD=.44). Only 28.9% of patients in the survey study reported that both treatment options were discussed with them., Conclusions: Patients with a stage I NSCLC found clinician guidance to be important when making treatment decisions. Nevertheless, the majority of patients reported not being offered both treatment options, which might have influenced this finding.