Communicating the results of risk-based breast cancer screening through visualizations of risk: a participatory design approach.

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.

Patients' perspectives and the perceptions of healthcare providers in the treatment of early rectal cancer; a qualitative study.

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.

Health literate-sensitive shared decision-making in maternity care: needs for support among maternity care professionals in the Netherlands.

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.

Promoting an active choice among physically inactive adults: a randomised web-based four-arm experiment.

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 (ß = 0.44;95%CI:0.04;0.84) and more frequently perceived an increase in physical activity between T0 and T2 (ß = 2.61;95%CI:1.44;7.72). GA participants also made a more active choice at T1 (ß = 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 (ß = 0.64;95%CI:0.15;1.12), autonomy (ß = 0.50;95%CI:0.05;0.95), and commitment (ß = 0.39;95%CI:0.04;0.74), and made a more active choice at T1 (ß = 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.

Testing the effects on information use by older versus younger women of modality and narration style in a hospital report card.

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 (Mage = 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.

Cocreation with Dutch patients of decision-relevant information to support shared decision-making about adjuvant treatment in breast cancer care.

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.

Office workers' perspectives on physical activity and sedentary behaviour: a qualitative study.

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.

Choice architecture interventions to change physical activity and sedentary behavior: a systematic review of effects on intention, behavior and health outcomes during and after intervention.

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.

Using PROMs during routine medical consultations: The perspectives of people with Parkinson's disease and their health professionals.

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.

How lay people understand and make sense of personalized disease risk information.

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.

Patients' Need for Tailored Comparative Health Care Information: A Qualitative Study on Choosing a Hospital.

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.

A patient perspective on shared decision making in stage I non-small cell lung cancer: a mixed methods study.

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.

Communicating cancer treatment information using the Web: utilizing the patient's perspective in website development.

BACKGROUND: Online cancer information can support patients in making treatment decisions. However, such information may not be adequately tailored to the patient's perspective, particularly if healthcare professionals do not sufficiently engage patient groups when developing online information. We applied qualitative user testing during the development of a patient information website on stereotactic ablative radiotherapy (SABR), a new guideline-recommended curative treatment for early-stage lung cancer. METHODS: We recruited 27 participants who included patients referred for SABR and their relatives. A qualitative user test of the website was performed in 18 subjects, followed by an additional evaluation by users after website redesign (N = 9). We primarily used the 'thinking aloud' approach and semi-structured interviewing. Qualitative data analysis was performed to assess the main findings reported by the participants. RESULTS: Study participants preferred receiving different information that had been provided initially. Problems identified with the online information related to comprehending medical terminology, understanding the scientific evidence regarding SABR, and appreciating the side-effects associated with SABR. Following redesign of the website, participants reported fewer problems with understanding content, and some additional recommendations for better online information were identified. CONCLUSIONS: Our findings indicate that input from patients and their relatives allows for a more comprehensive and usable website for providing treatment information. Such a website can facilitate improved patient participation in treatment decision-making for cancer.

Decision-making in breast cancer screening: A qualitative exploration of the match between women's beliefs and screening information in the Netherlands.

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.

Co-creation of a health literate-sensitive training and conversation aid to support shared decision-making in maternity care.

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.

Information and communication priorities of patients and healthcare professionals in shared decision making regarding adjuvant systemic breast cancer treatment: A survey study.

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.

Breast cancer patients' visual attention to information in hospital report cards: An eye-tracking study on differences between younger and older female patients.

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.

Conditions for autonomous reproductive decision-making in prenatal screening: A mixed methods study.

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.

Awareness of a disconnect between the value assigned to health and the effort devoted to health increases the intention to become more physically active.

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..

Consumers' interpretation and use of comparative information on the quality of health care: the effect of presentation approaches.

BACKGROUND: Public reports about health-care quality have not been effectively used by consumers thus far. A possible explanation is inadequate presentation of the information. OBJECTIVE: To assess which presentation features contribute to consumers' correct interpretation and effective use of comparative health-care quality information and to examine the influence of consumer characteristics. DESIGN: Fictitious Consumer Quality Index (CQI) data on home care quality were used to construct experimental presentation formats of comparative information. These formats were selected using conjoint analysis methodology. We used multilevel regression analysis to investigate the effects of presenting bar charts and star ratings, ordering of the data, type of stars, number of stars and inclusion of a global rating. SETTING AND PARTICIPANTS: Data were collected during 2 weeks of online questioning of 438 members of an online access panel. RESULTS: Both presentation features and consumer characteristics (age and education) significantly affected consumers' responses. Formats using combinations of bar charts and stars, three stars, an alphabetical ordering of providers and no inclusion of a global rating supported consumers. The effects of the presentation features differed across the outcome variables. CONCLUSIONS: Comparative information on the quality of home care is complex for consumers. Although our findings derive from an experimental situation, they provide several suggestions for optimizing the information on the Internet. More research is needed to further unravel the effects of presentation formats on consumer decision making in health care.