Internal Responsiveness of EQ-5D-5L and EORTC QLQ-C30 in Dutch Breast Cancer Patients during the First Year Post-Surgery: A Longitudinal Cohort Study.

The EuroQoL 5-Dimension 5-Level questionnaire (EQ-5D-5L) and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core-30 (EORTC QLQ-C30) are commonly used Patient-Reported Outcome Measures (PROMs) for breast cancer. This study assesses and compares the internal responsiveness of the EQ-5D-5L and EORTC QLQ-C30 in Dutch breast cancer patients during the first year post-surgery. Women diagnosed with breast cancer who completed the EQ-5D-5L and EORTC QLQ-C30 pre-operatively (T0), 6 months (T6), and 12 months post-surgery (T12) were included. Mean differences of the EQ-5D-5L and EORTC QLQ-C30 between baseline and 6 months (delta 1) and between baseline and 12 months post-surgery (delta 2) were calculated and compared against the respective minimal clinically important differences (MCIDs) of 0.08 and 5. Internal responsiveness was assessed using effect sizes (ES) and standardized response means (SRM) for both deltas. In total, 333 breast cancer patients were included. Delta 1 and delta 2 for the EQ-5D-5L index and most scales of the EORTC QLQ-C30 were below the MCID. The internal responsiveness for both PROMs was small (ES and SRM < 0.5), with greater internal responsiveness for delta 1 compared to delta 2. The EQ-5D-5L index showed greater internal responsiveness than the EORTC QLQ-C30 Global Quality of Life scale and summary score. These findings are valuable for the interpretation of both PROMs in Dutch breast cancer research and clinical care.

Clinical decision support systems for multidisciplinary team decision-making in patients with solid cancer: Composition of an implementation model based on a scoping review.

Generating guideline-based recommendations during multidisciplinary team (MDT) meetings in solid cancers is getting more complex due to increasing amount of information needed to follow the guidelines. Usage of clinical decision support systems (CDSSs) can simplify and optimize decision-making. However, CDSS implementation is lagging behind. Therefore, we aim to compose a CDSS implementation model. By performing a scoping review of the currently reported CDSSs for MDT decision-making we determined 102 barriers and 86 facilitators for CDSS implementation out of 44 papers describing 20 different CDSSs. The most frequently reported barriers and facilitators for CDSS implementation supporting MDT decision-making concerned CDSS maintenance (e.g. incorporating guideline updates), validity of recommendations and interoperability with electronic health records. Based on the identified barriers and facilitators, we composed a CDSS implementation model describing clinical utility, analytic validity and clinical validity to guide CDSS integration more successfully in the clinical workflow to support MDTs in the future.

Cognitive screening and rehabilitation after cardiac arrest: only a few hurdles to take.

Dutch and European guidelines recommend systematic screening for cognitive and emotional impairments in cardiac arrest survivors. We aimed to clarify opinions on cognitive screening and rehabilitation, identify barriers and facilitators for implementation in the Netherlands, and arrive at recommendations in this field. We conducted 22 semi-structured interviews with various stakeholders using the Tailored Implementation in Chronic Diseases checklist. There is broad-based acknowledgement of the relevance of cognitive impairment and a positive attitude regarding early cognitive screening among health professionals and patients. Barriers to implementation include a lack of practical recommendations on how, where and when to screen, insufficient knowledge of cognitive consequences of cardiac arrest, insufficient collaboration and knowledge sharing among different specialties within hospitals, insufficient resources, and insufficient evidence of the effectiveness of screening and therapy to justify financial compensation. Most of the identified barriers to implementation are solvable: national guidelines need practical recommendations and knowledge gaps among healthcare workers can be bridged by in-hospital collaboration. Fulfilling these requirements should be sufficient for the implementation of simple screening and tailored advice. More extensive cognitive rehabilitation therapy needs stronger evidence of efficacy in order to warrant stronger guideline recommendations and financial reimbursement.

Role Preferences in Medical Decision Making: Relevance and Implications for Health Preference Research.

Health preference research (HPR) is being increasingly conducted to better understand patient preferences for medical decisions. However, patients vary in their desire to play an active role in medical decisions. Until now, few studies have considered patients' preferred roles in decision making. In this opinion paper, we advocate for HPR researchers to assess and account for role preferences in their studies, to increase the relevance of their work for medical and shared decision making. We provide recommendations on how role preferences can be elicited and integrated with health preferences: (1) in formative research prior to a health preference study that aims to inform medical decisions or decision makers, (2a) in the development of health preference instruments, for instance by incorporating a role preference instrument and (2b) by clarifying the respondent's role in the decision prior to the preference elicitation task or by including role preferences as an attribute in the task itself, and (3) in statistical analysis by including random parameters or latent classes to raise awareness of heterogeneity in role preferences and how it relates to health preferences. Finally, we suggest redefining the decision process as a model that integrates the role and health preferences of the different parties that are involved. We believe that the field of HPR would benefit from learning more about the extent to which role preferences relate to health preferences, within the context of medical and shared decision making.

Withdrawing biologics in non-systemic JIA: what matters to pediatric rheumatologists?

OBJECTIVE: Approximately one third of children with JIA receive biologic therapy, but evidence on biologic therapy withdrawal is lacking. This study aims to increase our understanding of whether and when pediatric rheumatologists postpone a decision to withdraw biologic therapy in children with clinically inactive non-systemic JIA. METHODS: A survey containing questions about background characteristics, treatment patterns, minimum treatment time with biologic therapy, and 16 different patient vignettes, was distributed among 83 pediatric rheumatologists in Canada and the Netherlands. For each vignette, respondents were asked whether they would withdraw biologic therapy at their minimum treatment time, and if not, how long they would continue biologic therapy. Statistical analysis included descriptive statistics, logistic and interval regression analysis. RESULTS: Thirty-three pediatric rheumatologists completed the survey (40% response rate). Pediatric rheumatologists are most likely to postpone the decision to withdraw biologic therapy when the child and/or parents express a preference for continuation (OR 6.3; p < 0.001), in case of a flare in the current treatment period (OR 3.9; p = 0.001), and in case of uveitis in the current treatment period (OR 3.9; p < 0.001). On average, biologic therapy withdrawal is initiated 6.7 months later when the child or parent prefer to continue treatment. CONCLUSION: Patient's and parents' preferences were the strongest driver of a decision to postpone biologic therapy withdrawal in children with clinically inactive non-systemic JIA and prolongs treatment duration. These findings highlight the potential benefit of a tool to support pediatric rheumatologists, patients and parents in decision making, and can help inform its design.

Professionals' Treatment Preferences in the Prodromal Phase of Parkinson's Disease: A Discrete Choice Experiment.

BACKGROUND: In Parkinson's disease (PD), several disease-modifying treatments are being tested in (pre-)clinical trials. To successfully implement such treatments, it is important to have insight into factors influencing the professionals' decision to start disease-modifying treatments in persons who are in the prodromal stage of PD. OBJECTIVE: We aim to identify factors that professionals deem important in deciding to a start disease-modifying treatment in the prodromal stage of PD. METHODS: We used a discrete choice experiment (DCE) to elicit preferences of neurologists and last-year neurology residents regarding treatment in the prodromal phase of PD. The DCE contained 16 hypothetical choice sets in which participants were asked to choose between two treatment options. The presented attributes included treatment effect, risk of severe side-effects, risk of mild side-effects, route of administration, and annual costs. RESULTS: We included 64 neurologists and 18 last year neurology residents. Participants attached most importance to treatment effect and to the risk of severe side-effects. Participants indicated that they would discuss one of the presented treatments in daily practice more often in persons with a high risk of being in the prodromal phase compared to those with a moderate risk. Other important factors for deciding to start treatment included the amount of evidence supporting the putative treatment effect, the preferences of the person in the prodromal phase, and the life expectancy. CONCLUSION: This study provides important insights in factors that influence decision making by professionals about starting treatment in the prodromal phase of PD.

The ICEpop Capability Measure for Adults Instrument for Capabilities: Development of a Tariff for the Dutch General Population.

OBJECTIVES: The ICEpop Capability Measure for Adults (ICECAP-A) assesses 5 capabilities (stability, attachment, autonomy, achievement, and enjoyment) that are important to one's quality of life and might be an important addition to generic health questionnaires currently used in economic evaluations. This study aimed to develop a Dutch tariff of the Dutch translation of the ICECAP-A. METHODS: The methods used are similar to those used in the development of the UK tariff. A profile case best-worst scaling task was presented to 1002 participants from the general Dutch population. A scale-adjusted latent class analysis was performed to test for preferences of ICECAP-A capabilities and scale heterogeneity. RESULTS: A 3-preference class 2-scale class model with worst choice as scale predictor was considered optimal and was used to calculate the resulting tariff. Results indicated that the capabilities stability, attachment, and enjoyment were considered more important aspects of quality of life than autonomy and achievement. Additionally, improving capabilities from low to moderate levels had a larger effect on quality of life than improving capabilities that were already at a higher level. CONCLUSIONS: The ICECAP-A tariffs found in this study could be used in economic evaluations of healthcare interventions in The Netherlands.

Use of the Left Radial Artery as Vascular Access for Coronary Angiography and as a Bypass Conduit: A Clinical Dilemma?

PURPOSE: International coronary revascularization guidelines recommend both, transradial vascular access for coronary angiography/intervention and use of the radial artery as a conduit for coronary artery bypass grafting (CABG). These recommendations may pose a clinical dilemma, as transradial access exposes these arteries to vascular trauma which makes them potentially unsuitable as future grafts. In this study, we investigated the awareness and views of cardiologists on these guideline recommendations. METHODS: We performed semi-structured interviews with 50 cardiologists from 19 centers, who regularly perform coronary angiographies or interventions, and outlined clinical scenarios to evaluate their preference of vascular access. In addition, we assessed whether preference was related to sub-specialization. RESULTS: The interviewed cardiologists had 16 ± 9.3 years of professional experience. There were 23 (46%) cardiologists from 7 centers without percutaneous coronary intervention facilities, and 27 (56%) cardiologists from 12 interventional centers. All 50 (100%) cardiologists indicated familiarity with the guidelines, yet 28 (56%) said not to be familiar with the aforementioned dilemma, and 9 (18%) stated there was no dilemma at all. Responses did not differ significantly between interventional (n = 28) and non-interventional (n = 22) cardiologists; however, if the right radial artery was unavailable (e.g., occluded), interventional cardiologists more often said to prefer access via the left radial artery (18/28 (64%) vs. 5/22 (23%), p = 0.001). CONCLUSION: More than half of the interviewed cardiologists indicated that they had not realized that left transradial access preceding CABG may preclude later use of this artery as a conduit. Notably, in case of unavailability of the right radial artery, interventional cardiologists preferred left transradial access more often than non-interventional cardiologists.

The ICECAP-A instrument for capabilities: assessment of construct validity and test-retest reliability in a general Dutch population.

PURPOSE: The ICEpop CAPability measure for Adults (ICECAP-A) assesses five capabilities that are important to one's well-being. The instrument might be an important addition to generic health questionnaires when evaluating quality of life extending beyond health. This study aimed to conduct a psychometric assessment of the Dutch translation of the ICECAP-A. METHODS: Construct validity of the instrument was assessed in two ways. First, by measuring correlations with the EQ-5D-5L questionnaire and a measure of self-efficacy and, second, by investigating the ability to distinguish between groups known to differ on the construct the ICECAP-A means to capture. Additionally, test-retest reliability was evaluated. RESULTS: In total, 1002 participants representative of the general Dutch population completed an online survey. For test-retest reliability, 252 participants completed the same questionnaire 2 weeks later. The ICECAP-A indicated moderate to strong correlations with the EQ-5D-5L and a strong correlation with self-efficacy. Furthermore, it was capable of differentiating known groups. Moreover, results indicated adequate test-retest reliability with an intraclass correlation coefficient of 0.79. CONCLUSION: In summary, results suggest adequate test-retest reliability and construct validity and indicate that the ICECAP-A might be of added value, especially when considering areas outside of the traditional health intervention model.

Preferences of Treatment Strategies among Women with Low-Risk DCIS and Oncologists.

As ongoing trials study the safety of an active surveillance strategy for low-risk ductal carcinoma in situ (DCIS), there is a need to explain why particular choices regarding treatment strategies are made by eligible women as well as their oncologists, what factors enter the decision process, and how much each factor affects their choice. To measure preferences for treatment and surveillance strategies, women with newly-diagnosed, primary low-risk DCIS enrolled in the Dutch CONTROL DCIS Registration and LORD trial, and oncologists participating in the Dutch Health Professionals Study were invited to complete a discrete choice experiment (DCE). The relative importance of treatment strategy-related attributes (locoregional intervention, 10-year risk of ipsilateral invasive breast cancer (iIBC), and follow-up interval) were discerned using conditional logit models. A total of n = 172 patients and n = 30 oncologists completed the DCE. Patient respondents had very strong preferences for an active surveillance strategy with no surgery, irrespective of the 10-year risk of iIBC. Extensiveness of the locoregional treatment was consistently shown to be an important factor for patients and oncologists in deciding upon treatment strategies. Risk of iIBC was least important to patients and most important to oncologists. There was a stronger inclination toward a twice-yearly follow-up for both groups compared to annual follow-up.

Health Preference Research in Europe: A Review of Its Use in Marketing Authorization, Reimbursement, and Pricing Decisions-Report of the ISPOR Stated Preference Research Special Interest Group.

OBJECTIVE: This study examines European decision makers' consideration and use of quantitative preference data. METHODS: The study reviewed quantitative preference data usage in 31 European countries to support marketing authorization, reimbursement, or pricing decisions. Use was defined as: agency guidance on preference data use, sponsor submission of preference data, or decision-maker collection of preference data. The data could be collected from any stakeholder using any method that generated quantitative estimates of preferences. Data were collected through: (1) documentary evidence identified through a literature and regulatory websites review, and via key opinion leader outreach; and (2) a survey of staff working for agencies that support or make healthcare technology decisions. RESULTS: Preference data utilization was identified in 22 countries and at a European level. The most prevalent use (19 countries) was citizen preferences, collected using time-trade off or standard gamble methods to inform health state utility estimation. Preference data was also used to: (1) value other impact on patients, (2) incorporate non-health factors into reimbursement decisions, and (3) estimate opportunity cost. Pilot projects were identified (6 countries and at a European level), with a focus on multi-criteria decision analysis methods and choice-based methods to elicit patient preferences. CONCLUSION: While quantitative preference data support reimbursement and pricing decisions in most European countries, there was no utilization evidence in European-level marketing authorization decisions. While there are commonalities, a diversity of usage was identified between jurisdictions. Pilots suggest the potential for greater use of preference data, and for alignment between decision makers.

Development and usability testing of a multi-criteria value clarification methods for patients with localized prostate cancer.

Current guidelines for the development of decision aids recommend that they have to include a process for helping patients clarify their personal values, for example, by using values clarification methods. In this article, we extensively described the development process of the web-based values clarification method for patients with localized low- to intermediate-risk prostate cancer based on the analytic hierarchy process. With analytic hierarchy process, the relative importance of different attributes of available treatments can be determined through series of pairwise comparisons of potential outcomes. Furthermore, analytic hierarchy process is able to use this information to present respondents with a quantitative overall treatment score and can therefore give actual treatment advice upon patients' request. The addition of this values clarification method to an existing web-based treatment decision aid for patients with localized prostate cancer is thought to improve the support offered to patients in their decision-making process and their decision quality.

Primary care in five European countries: A citizens' perspective on the quality of care for children.

OBJECTIVE: As part of the Models of Child Health Appraised (MOCHA) project, this study aimed to answer the following research questions: 1) How do European citizens perceive the quality of primary health care provided for children? And 2) What are their priorities with respect to quality assessment of primary health care aimed at satisfying children's needs? METHODS: Nine potential attributes of quality of primary care were operationalized in 40 quality aspects. An online survey was used to elicit opinions in a representative sample of citizens of Germany, the Netherlands, Poland, Spain, and the United Kingdom. Data collection comprised: background characteristics; perceived quality of primary health care for children; and priority setting of quality aspects. Descriptive analysis was performed and differences between groups were tested using Chi-Square test and ANOVA. RESULTS: Valid results were obtained from 2403 respondents. Mean satisfaction with quality of primary care ranged from 5.5 (Poland) to 7.2 (Spain). On average, between 56% (Poland) and 70% (Netherlands) of respondents had a positive perception of the primary health care system for children in their country. The ability of a child to limit their parents' access to the child's medical records was judged most negatively in all countries (average agreement score 28%, range 12-36%). The right of a child to a confidential consultation was judged most differently between countries (average agreement score 61%, range 40-75%). Overall top-10 priorities in ensuring high quality primary care were: timeliness (accessibility); skills/competences, management, facilities (appropriateness); no costs (affordability); information, dignity/respect (continuity); and swift referrals, collaboration (coordination). DISCUSSION: Between countries, significant differences exist in the perceived quality of primary care and priorities with regard to quality assessment. Taking into account the citizens' perspective in decision-making means that aspects with low perceived quality that are highly prioritized warrant further action.

Opportunities for personalised follow-up care among patients with breast cancer: A scoping review to identify preference-sensitive decisions.

INTRODUCTION: Current follow-up arrangements for breast cancer do not optimally meet the needs of individual patients. We therefore reviewed the evidence on preferences and patient involvement in decisions about breast cancer follow-up to explore the potential for personalised care. METHODS: Studies published between 2008 and 2017 were extracted from MEDLINE, PsycINFO and EMBASE. We then identified decision categories related to content and form of follow-up. Criteria for preference sensitiveness and patient involvement were compiled and applied to determine the extent to which decisions were sensitive to patient preferences and patients were involved. RESULTS: Forty-one studies were included in the full-text analysis. Four decision categories were identified: "surveillance for recurrent/secondary breast cancer; consultations for physical and psychosocial effects; recurrence-risk reduction by anti-hormonal treatment; and improving quality of life after breast cancer." There was little evidence that physicians treated decisions about anti-hormonal treatment, menopausal symptoms, and follow-up consultations as sensitive to patient preferences. Decisions about breast reconstruction were considered as very sensitive to patient preferences, and patients were usually involved. CONCLUSION: Patients are currently not involved in all decisions that affect them during follow-up, indicating a need for improvements. Personalised follow-up care could improve resource allocation and the value of care for patients.

Women's preferences, willingness-to-pay, and predicted uptake for single-nucleotide polymorphism gene testing to guide personalized breast cancer screening strategies: a discrete choice experiment.

BACKGROUND: Single-nucleotide polymorphism (SNP) gene test is a potential tool for improving the accuracy of breast cancer risk prediction. We seek to measure women's preferences and marginal willingness-to-pay (mWTP) for this new technology. MATERIALS AND METHODS: We administered a discrete choice experiment (DCE) to English-speaking Singaporean women aged 40-69 years without any history of breast cancer, enrolled via door-to-door recruitment with quota sampling by age and ethnicity. DCE attributes comprise: 1) sample type (buccal swab and dried blood spot), 2) person conducting pretest discussion (specialist doctor, non-specialist doctor, and nurse educator), 3) test location (private family clinic, public primary-care clinic, and hospital), and 4) out-of-pocket cost (S$50, S$175, and S$300). Mixed logit model was used to estimate the effect of attribute levels on women's preferences and mWTP. Interactions between significant attributes and respondent characteristics were investigated. Predicted uptake rates for various gene testing scenarios were studied. RESULTS: A total of 300 women aged 52.6±7.6 years completed the survey (100 Chinese, Malay, and Indian women, respectively). Sample type (P=0.046), person conducting pretest discussion, and out-of-pocket cost (P<0.001) are significantly associated with going for SNP gene testing. Women with higher income and education levels are more willing to pay higher prices for the test. Preferences in terms of mWTP across ethnic groups appear similar, but Chinese women have greater preference heterogeneity for the attributes. Predicted uptake for a feasible scenario consisting of buccal swab, pretest discussion with nurse educator at the hospital costing S$50 is 60.5%. Only 3.3% of women always opted out of the SNP gene test in real life. Reasons include high cost, poor awareness, and indifference toward test results. CONCLUSION: SNP gene testing may be tailored according to individual preferences to encourage uptake. Future research should focus on outcomes and cost-effectiveness of personalized breast cancer screening using SNP gene testing.

Are component endpoints equal? A preference study into the practice of composite endpoints in clinical trials.

OBJECTIVES: To examine patients' perspectives regarding composite endpoints and the utility patients put on possible adverse outcomes of revascularization procedures. DESIGN: In the PRECORE study, a stated preference elicitation method Best-Worst Scaling (BWS) was used to determine patient preference for 8 component endpoints (CEs): need for redo percutaneous coronary intervention (PCI) within 1 year, minor stroke with symptoms <24 hours, minor myocardial infarction (MI) with symptoms <3 months, recurrent angina pectoris, need for redo coronary artery bypass grafting (CABG) within 1 year, major MI causing permanent disability, major stroke causing permanent disability and death within 24 hours. SETTING: A tertiary PCI/CABG centre. PARTICIPANTS: One hundred and sixty patients with coronary artery disease who underwent PCI or CABG. MAIN OUTCOME MEASURES: Importance weights (IWs). RESULTS: Patients considered need for redo PCI within 1 year (IW: 0.008), minor stroke with symptoms <24 hours (IW: 0.017), minor MI with symptoms <3 months (IW: 0.027), need for redo CABG within 1 year (IW: 0.119), recurrent angina pectoris (IW: 0.300) and major MI causing permanent disability (IW: 0.726) less severe than death within 24 hours (IW: 1.000). Major stroke causing permanent disability was considered worse than death within 24 hours (IW: 1.209). Ranking of CEs and the relative values attributed to the CEs differed among subgroups based on gender, age and educational level. CONCLUSION: Patients attribute different weight to individual CEs. This has significant implications for the interpretation of clinical trial data.

Patients' Priorities for Oral Anticoagulation Therapy in Non-valvular Atrial Fibrillation: a Multi-criteria Decision Analysis.

INTRODUCTION: Effectiveness of oral anticoagulants (OACs) is critically dependent on patients' adherence to intake regimens. We studied the relative impact of attributes related to effectiveness, safety, convenience, and costs on the value of OAC therapy from the perspective of patients with non-valvular atrial fibrillation. METHODS: Four attributes were identified by literature review and expert interviews: effectiveness (risk of ischemic stroke), safety (risk of major bleeding, minor bleeding, gastrointestinal complaints), convenience (intake frequency, diet restrictions, international normalized ratio [INR] blood monitoring, pill type/intake instructions), and out-of-pocket costs. Focus groups were held in Spain, Germany, France, Italy and the United Kingdom (N = 48) to elicit patients' preferences through the use of the analytical hierarchy process method. RESULTS: Effectiveness (60%) and side effects (27%) have a higher impact on the perceived value of OACs than drug convenience (7%) and out-of-pocket costs (6%). As for convenience, eliminating monthly INR monitoring was given the highest priority (40%), followed by reducing diet restrictions (27%), reducing intake frequency (17%) and improving the pill type/intake instructions (15%). The most important side effect was major bleeding (75%), followed by minor bleeding (15%) and gastrointestinal complaints (10%). Furthermore, 71% of patients preferred once-daily intake to twice-daily intake. DISCUSSION: Although the relative impact of convenience on therapy value is small, patients have different preferences for options within convenience criteria. Besides considerations on safety and effectiveness, physicians should also discuss attributes of convenience with patients, as it can be assumed that alignment to patient preferences in drug prescription and better patient education could result in higher adherence.

Perceived advantages and disadvantages of oral anticoagulants, and the trade-offs patients make in choosing anticoagulant therapy and adhering to their drug regimen.

OBJECTIVE: The objective of this study was to explore the perceived advantages and disadvantages of oral anticoagulant therapies (OAT), and the trade-offs patients make in choosing therapy and adhering to their drug regimen. METHODS: Five focus group sessions were conducted across Europe among patients with atrial fibrillation to identify the most important factors impacting OAT's value and adherence. RESULTS: The most frequently identified barriers to OAT were lack of knowledge; poor patient-physician relationships; distraction due to employment or social environment; prior bleeding event(s) or the fear of bleeding; and changes in routine. Factors identified as promoting adherence included patients' personality, motivation, attitudes, and medication-taking habits and routines, as well as good quality health services. Inconvenient aspects of vitamin-K antagonists, such as regular blood monitoring and diet restrictions, were not reported to influence adherence, but may trigger patients to switch to direct oral anticoagulants. CONCLUSION: Most patients reported that a mixture of modifiable and non-modifiable factors helps them to take their drugs as prescribed. Individual patients' particular needs and preferences regarding OAT vary. PRACTICE IMPLICATIONS: OAT adherence can be promoted if therapies are tailored to patients' needs and preferences. Patients should be supported to share their preferences with their clinician.

Individual Value Clarification Methods Based on Conjoint Analysis: A Systematic Review of Common Practice in Task Design, Statistical Analysis, and Presentation of Results.

BACKGROUND: There is an increased practice of using value clarification exercises in decision aids that aim to improve shared decision making. Our objective was to systematically review to which extent conjoint analysis (CA) is used to elicit individual preferences for clinical decision support. We aimed to identify the common practices in the selection of attributes and levels, the design of choice tasks, and the instrument used to clarify values. METHODS: We searched Scopus, PubMed, PsycINFO, and Web of Science to identify studies that developed a CA exercise to elicit individual patients' preferences related to medical decisions. We extracted data on the above-mentioned items. RESULTS: Eight studies were identified. Studies included a fixed set of 4-8 attributes, which were predetermined by interviews, focus groups, or literature review. All studies used adaptive conjoint analysis (ACA) for their choice task design. Furthermore, all studies provided patients with their preference results in real time, although the type of outcome that was presented to patients differed (attribute importance or treatment scores). Among studies, patients were positive about the ACA exercise, whereas time and effort needed from clinicians to facilitate the ACA exercise were identified as the main barriers to implementation. DISCUSSION: There is only limited published use of CA exercises in shared decision making. Most studies resembled each other in design choices made, but patients received different feedback among studies. Further research should focus on the feedback patients want to receive and how the CA results fit within the patient-physician dialogue.