Can the General Public Be a Proxy for an "At-Risk" Group in a Patient Preference Study? A Disease Prevention Example in Rheumatoid Arthritis.

BACKGROUND: When selecting samples for patient preference studies, it may be difficult or impractical to recruit participants who are eligible for a particular treatment decision. However, a general public sample may not be an appropriate proxy. OBJECTIVE: This study compares preferences for rheumatoid arthritis (RA) preventive treatments between members of the general public and first-degree relatives (FDRs) of confirmed RA patients to assess whether a sample of the general public can be used as a proxy for FDRs. METHODS: Participants were asked to imagine they were experiencing arthralgia and had screening tests indicating a 60% chance of developing RA within 2 yrs. Using a discrete choice experiment, participants were offered a series of choices between no treatment and 2 unlabeled hypothetical treatments to reduce the risk of RA. To assess data quality, time to complete survey sections and comprehension questions were assessed. A random parameter logit model was used to obtain attribute-level estimates, which were used to calculate relative importance, maximum acceptable risk (MAR), and market shares of hypothetical preventive treatments. RESULTS: The FDR sample (n = 298) spent more time completing the survey and performed better on comprehension questions compared with the general public sample (n = 982). The relative importance ranking was similar between the general public and FDR participant samples; however, other relative preference measures involving weights including MARs and market share differed between groups, with FDRs having numerically higher MARs. CONCLUSION: In the context of RA prevention, the general public (average risk) may be a reasonable proxy for a more at-risk sample (FDRs) for overall relative importance ranking but not weights. The rationale for a proxy sample should be clearly justified. HIGHLIGHTS: Participants from the general public were compared to first-degree relatives on their preferences for rheumatoid arthritis (RA) preventive treatments using a discrete choice experiment.Preferences were similar between groups in terms of the most important and least important attributes of preventive treatments, with effectiveness being the most important attribute. However, relative weights differed.Attention to the survey and predicted market shares of hypothetical RA preventive treatments differed between the general public and first-degree relatives.The general public may be a reasonable proxy for an at-risk group for patient preferences ranks but not weights in the disease prevention context; however, care should be taken in sample selection for patient preference studies when choosing nonpatients.

Comparing Discrete Choice Experiment with Swing Weighting to Estimate Attribute Relative Importance: A Case Study in Lung Cancer Patient Preferences.

INTRODUCTION: Discrete choice experiments (DCE) are commonly used to elicit patient preferences and to determine the relative importance of attributes but can be complex and costly to administer. Simpler methods that measure relative importance exist, such as swing weighting with direct rating (SW-DR), but there is little empirical evidence comparing the two. This study aimed to directly compare attribute relative importance rankings and weights elicited using a DCE and SW-DR. METHODS: A total of 307 patients with non-small-cell lung cancer in Italy and Belgium completed an online survey assessing preferences for cancer treatment using DCE and SW-DR. The relative importance of the attributes was determined using a random parameter logit model for the DCE and rank order centroid method (ROC) for SW-DR. Differences in relative importance ranking and weights between the methods were assessed using Cohen's weighted kappa and Dirichlet regression. Feedback on ease of understanding and answering the 2 tasks was also collected. RESULTS: Most respondents (>65%) found both tasks (very) easy to understand and answer. The same attribute, survival, was ranked most important irrespective of the methods applied. The overall ranking of the attributes on an aggregate level differed significantly between DCE and SW-ROC (P < 0.01). Greater differences in attribute weights between attributes were reported in DCE compared with SW-DR (P < 0.01). Agreement between the individual-level attribute ranking across methods was moderate (weighted Kappa 0.53-0.55). CONCLUSION: Significant differences in attribute importance between DCE and SW-DR were found. Respondents reported both methods being relatively easy to understand and answer. Further studies confirming these findings are warranted. Such studies will help to provide accurate guidance for methods selection when studying relative attribute importance across a wide array of preference-relevant decisions. HIGHLIGHTS: Both DCEs and SW tasks can be used to determine attribute relative importance rankings and weights; however, little evidence exists empirically comparing these methods in terms of outcomes or respondent usability.Most respondents found the DCE and SW tasks very easy or easy to understand and answer.A direct comparison of DCE and SW found significant differences in attribute importance rankings and weights as well as a greater spread in the DCE-derived attribute relative importance weights.

Precision cancer medicine and the doctor-patient relationship: a systematic review and narrative synthesis.

BACKGROUND: The implementation of precision medicine is likely to have a huge impact on clinical cancer care, while the doctor-patient relationship is a crucial aspect of cancer care that needs to be preserved. This systematic review aimed to map out perceptions and concerns regarding how the implementation of precision medicine will impact the doctor-patient relationship in cancer care so that threats against the doctor-patient relationship can be addressed. METHODS: Electronic databases (Pubmed, Scopus, Web of Science, Social Science Premium Collection) were searched for articles published from January 2010 to December 2021, including qualitative, quantitative, and theoretical methods. Two reviewers completed title and abstract screening, full-text screening, and data extraction. Findings were summarized and explained using narrative synthesis. RESULTS: Four themes were generated from the included articles (n = 35). Providing information addresses issues of information transmission and needs, and of complex concepts such as genetics and uncertainty. Making decisions in a trustful relationship addresses opacity issues, the role of trust, and and physicians' attitude towards the role of precision medicine tools in decision-making. Managing negative reactions of non-eligible patients addresses patients' unmet expectations of precision medicine. Conflicting roles in the blurry line between clinic and research addresses issues stemming from physicians' double role as doctors and researchers. CONCLUSIONS: Many findings have previously been addressed in doctor-patient communication and clinical genetics. However, precision medicine adds complexity to these fields and further emphasizes the importance of clear communication on specific themes like the distinction between genomic and gene expression and patients' expectations about access, eligibility, effectiveness, and side effects of targeted therapies.

Public Preferences for Introducing a COVID-19 Certificate: A Discrete Choice Experiment in the Netherlands.

OBJECTIVE: Here we investigate public preferences for coronavirus disease 2019 (COVID-19) certificates in the Netherlands, and whether these preferences differ between subgroups in the population. METHODS: A survey including a discrete choice experiment was administered to 1500 members of the adult population of the Netherlands. Each participant was asked to choose between hypothetical COVID-19 certificates that differed in seven attributes: the starting date, and whether the certificate allowed gathering with multiple people, shopping without appointment, visiting bars and restaurants, visiting cinemas and theatres, attending events, and practising indoor sports. Latent class models (LCMs) were used to determine the attribute relative importance and predicted acceptance rate of hypothetical certificates. RESULTS: Three classes of preference patterns were identified in the LCM. One class a priori opposed a certificate (only two attributes influencing preferences), another class was relatively neutral and included all attributes in their decision making, and the final class was positive towards a certificate. Respondents aged > 65 years and those who plan to get vaccinated were more likely to belong to the latter two classes. Being allowed to shop without appointment and to visit bars and restaurants was most important to all respondents, increasing predicted acceptance rate by 12 percentage points. CONCLUSIONS: Preferences for introduction of a COVID-19 certificate are mixed. A certificate that allows for shopping without appointment and visiting bars and restaurants is likely to increase acceptance. The support of younger citizens and those who plan to get vaccinated seems most sensitive to the specific freedoms granted by a COVID-19 certificate.

Exploring preferences of at-risk individuals for preventive treatments for rheumatoid arthritis.

OBJECTIVE: Some immunomodulatory drugs have been shown to delay the onset of, or lower the risk of developing, rheumatoid arthritis (RA), if given to individuals at risk. Several trials are ongoing in this area; however, little evidence is currently available about the views of those at risk of RA regarding preventive treatment. METHOD: Three focus groups and three interviews explored factors that are relevant to first degree relatives (FDRs) of RA patients and members of the general public when considering taking preventive treatment for RA. The semi-structured qualitative interview prompts explored participant responses to hypothetical attributes of preventive RA medicines. Transcripts of focus group/interview proceedings were inductively coded and analysed using a framework approach. RESULTS: Twenty-one individuals (five FDRs, 16 members of the general public) took part in the study. Ten broad themes were identified describing factors that participants felt would influence their decisions about whether to take preventive treatment if they were at increased risk of RA. These related either directly to features of the specific treatment or to other factors, including personal characteristics, attitude towards taking medication, and an individual's actual risk of developing RA. CONCLUSION: This research highlights the importance of non-treatment factors in the decision-making process around preventive treatments, and will inform recruitment to clinical trials as well as information to support shared decision making by those considering preventive treatment. Studies of treatment preferences in individuals with a confirmed high risk of RA would further inform clinical trial design.

Preferences regarding antibiotic treatment and the role of antibiotic resistance: A discrete choice experiment.

OBJECTIVES: To identify preferences of the Swedish public regarding antibiotic treatment characteristics and the relative weight of antibiotic resistance in their treatment choices. METHODS: A questionnaire including a discrete choice experiment questionnaire was answered by 378 Swedish participants. Preferences of the general public regarding five treatment characteristics (attributes) were measured: contribution to antibiotic resistance, cost, side effects, failure rate and treatment duration. Latent class analysis models were used to determine attribute-level estimates and heterogeneity in preferences. Relative importance of the attributes and willingness to pay for antibiotics with a lower contribution to antibiotic resistance were calculated from the estimates. RESULTS: All attributes influenced participants' preferences for antibiotic treatment. For the majority of participants, contribution to antibiotic resistance was the most important attribute. Younger respondents found contribution to antibiotic resistance more important in their choice of antibiotic treatments. Choices of respondents with lower numeracy, higher health literacy and higher financial vulnerability were influenced more by the cost of the antibiotic treatment. Older respondents with lower financial vulnerability and health literacy, and higher numeracy found side effects to be most important. CONCLUSIONS: All attributes can be considered as potential drivers of antibiotic use by lay people. Findings also suggest that the behaviour of lay people may be influenced by concerns over the rise of antibiotic resistance. Therefore, stressing individual responsibility for antibiotic resistance in clinical and societal communication has the potential to affect personal decision making.

Can healthcare choice be predicted using stated preference data?

Lack of evidence about the external validity of Discrete Choice Experiments (DCEs)-sourced preferences inhibits greater use of DCEs in healthcare decision-making. This study examines the external validity of such preferences, unravels its determinants, and provides evidence of whether healthcare choice is predictable. We focused on influenza vaccination and used a six-step approach: i) literature study, ii) expert interviews, iii) focus groups, iv) survey including a DCE, v) field data, and vi) in-depth interviews with respondents who showed discordance between stated choices and actual healthcare utilization. Respondents without missing values in the survey and the actual healthcare utilization (377/499 = 76%) were included in the analyses. Random-utility-maximization and random-regret-minimization models were used to analyze the DCE data, whereas the in-depth interviews combined five scientific theories to explain discordance. When models took into account both scale and preference heterogeneity, real-world choices to opt for influenza vaccination were correctly predicted by DCE at an aggregate level, and 91% of choices were correctly predicted at an individual level. There was 13% (49/377) discordance between stated choices and actual healthcare utilization. In-depth interviews showed that several dimensions played a role in clarifying this discordance: attitude, social support, action of planning, barriers, and intention. Evidence was found that our DCE yields accurate actual healthcare choice predictions if at least scale and preference heterogeneity are taken into account. Analysis of discordant subjects showed that we can even do better. The DCE measures an important part of preferences by focusing on attribute tradeoffs that people make in their decision to participate in a healthcare intervention. Inhibitors may be among these attributes, but it is more likely that inhibitors have to do with exogenous factors like goals, religion, and social norms. Con-ducting upfront work on constraints/inhibitors of the focal behavior, not just what promotes the behavior, might further improve predictive ability.

Exploring research participants' perceptions of cardiovascular risk information-Room for improvement and empowerment.

OBJECTIVE: The objective of this study was to explore research participants' (adults, age 50-65) perceptions of receiving cardiovascular risk information. METHODS: Five focus group interviews (N = 31) were performed with research participants aged 50-65 who participated in the Swedish CArdioPulmonary BioImage Study (SCAPIS). The interviews were analyzed using qualitative content analysis. RESULTS: The categories; the complexity of cardiovascular risk; insufficient presentation of test result; emotional responses; and health examinations provides confirmation, emerged. The test results were written in medical terms and lacked recommendations for further action which made it difficult for lay people to understand and use, and for some, also caused unnecessary worry. CONCLUSION: There was inadequate guidance concerning the implications of the test results, especially for participants without clinical findings. In order to allow research participants to obtain better cognitive and behavioral control, improvements are needed with regard to how personal risk information is communicated in research projects connected to health services. PRACTICAL IMPLICATIONS: The participants largely relied on physical signs when assessing their own cardiovascular risk. Health examinations are crucial for helping to add nuance to individuals' risk perceptions. For personal health information to have any real value for individuals, it must be designed from a user perspective.

Vaccine preferences and acceptance of older adults.

BACKGROUND: Expanding vaccination programs for the older population might be important as older adults are becoming a larger proportion of the general population. The aim of this study is to determine the relative importance of vaccine and disease specific characteristics and acceptance for Dutch older adults, including pneumococcal disease, herpes zoster, pertussis vaccination, and influenza vaccination. METHODS: A discrete choice experiment was conducted to generate choice data that was analyzed using a mixed multinomial logit statistical model. RESULTS: Important factors that were associated with vaccination acceptance in older adults are high mortality risk of the infectious disease, high susceptibility of getting the infectious disease, and high vaccine effectiveness. Age, influenza vaccination in 2013 and self-perceived health score were identified as personal factors that affect vaccine preference. Potential vaccination rates of older adults were estimated at 68.1% for pneumococcal vaccination, 58.1% for herpes zoster vaccination, 53.9% for pertussis vaccination and 54.3% for influenza vaccination. For persons aged 50-65, potential vaccination rates were estimated at 58.1% for pneumococcal vaccination, 49.5% for herpes zoster vaccination, 43.9% for pertussis vaccination and 42.2% for influenza vaccination. For persons aged 65 and older, these were respectively 76.2%, 67.5%, 57.5% and 65.5%. DISCUSSION: Our results suggest that older adults are most likely to accept pneumococcal vaccination of the four vaccines. Information provision accompanied with the implementation of a new vaccine has to be tailored for the individual and the vaccine it concerns. Special attention is needed to ensure high uptake among persons aged 50-65years.

Potential reach of effective smoking prevention programmes in vocational schools: determinants of school directors' intention to adopt these programmes.

OBJECTIVES: Investigating the current, intended and potential reach of two effective smoking prevention programs in Dutch vocational schools and identifying determinants of school directors' intention to adopt these programs. STUDY DESIGN: Cross-sectional survey. METHODS: Two questionnaires were developed based on the Diffusion of Innovation theory and the I-Change model, focussing on either the 'Healthy School and Stimulants program' (HSS program) or the 'Out-of-school Computer Tailoring program' (CT program). The questionnaires were distributed amongst all Dutch vocational school directors (n = 452) of which 34% completed the questionnaire. RESULTS: The potential reach of the HSS program was 29% whereas the potential reach of the CT program was 5%. Regression analyses revealed that being female, perceiving a higher percentage of smoking students in school, having a personality more open towards change, perceiving a low need for a smoking prevention program, fewer disadvantages of the program, a higher level of self-efficacy towards adopting the program and a more positive social norm towards adopting a smoking prevention program from other school directors resulted in a positive intention towards adopting either program. CONCLUSIONS: The present study showed that the reach of effective smoking prevention programs is fairly low. School-based smoking prevention efforts are likely to improve if schools choose to use programs that are proven to be effective, which can be encouraged by adapting existing and newly designed programs to school directors' characteristics and providing easy access to reliable information regarding available programs.