Explaining Distortions in Utility Elicitation through the Rank-Dependent Model for Risky Choices

The standard gamble (SG) method has been accepted as the gold standard for the elicitation of utility when risk or uncertainty is involved in decisions, and thus for the measurement of utility in medical decisions. Unfortunately, the SG method is distorted by a general dislike for gambles, the "gambling effect," leading to an overestimation of risk aversion and of utility of impaired health. This problem does not occur for visual analogue scales or the time tradeoff method. For risky decisions, however, the latter methods lack validity. This paper shows how "rank-dependent utility" theory, a newly developed theory in the decision science literature, can provide a new explanation for the gambling effect. Thus it provides a means to correct the SG method and to improve the assessments of quality adjusted life years for medical decisions in which there is uncertainty about outcomes

The Utility of Health States After Stroke: A Systematic Review of the Literature

Background—: To perform decision analyses that include stroke as one of the possible health states, the utilities of stroke states must be determined. We reviewed the literature to obtain estimates of the utility of stroke and explored the impact of the study population and the elicitation method. Summary of Review—: We searched various databases for articles reporting empirical assessment of utilities. Mean utilities of major stroke (Rankin Scale 4 to 5) and minor stroke (Rankin Scale 2 to 3) were calculated, stratified by study population and elicitation method. Additionally, the modified Rankin Scale was mapped onto the EuroQol classification system. Utilities were obtained from 23 articles. Patients at risk for stroke assigned utilities of 0.26 and 0.55 to major and minor stroke, respectively. Stroke survivors assigned higher utilities to both major (0.41) and minor stroke (0.72). The EuroQol completed by stroke survivors revealed a utility of 0.32 and 0.71 for major and minor stroke, respectively. Utilities elicited by the Standard Gamble were generally higher, while those obtained by the Visual Analogue Scale were lower than the Time Trade Off values. Remaining variation between utilities may be caused by differences in definitions of the health states. The mapped EuroQol indicated a utility of 0.64 for minor stroke and a value just below zero for majo

Psychometric evaluation of the Health-Risk Attitude Scale (HRAS-13)

__Objectives:__ The aim of this study was to assess the reliability, dimensionality and validity of the self-report questionnaire Health-Risk Attitude Scale (HRAS-13) in a sample of the general population and a patient population. __Methods:__ Sample 1 (_n_ = 930) was recruited from the general population aged 18–65 years in the Netherlands. Sample 2 (_n_ = 486) was recruited from the population of knee and hip osteoarthritis patients aged 45 and over, also from the Netherlands. Reliability was assessed using Cronbach’s alpha, average inter-item correlation and item-total correlations. Dimensionality was examined using confirmatory factor analysis (CFA), principal component analysis (PCA) and bifactor analysis. Validity was assessed by performing known-group analysis using ANOVA tests. __Results:__ Cronbach’s alphas of the HRAS-13 were 0.73 in sample 1 and 0.69 in sample 2. Reliability and dimensionality analyses differed slightly between the samples, and suggest that a short version of the HRAS may capture a general component of health-risk attitude. Validity assessment of known groups showed that the HRAS-13 and a likely HRAS-6 distinguished between subgroups of respondents based on most of the assessed characteristics, but not all. __Discussion:__ These findings are a preliminary indication that the HRAS-13 is a promising multidimensional instrument for measuring health-risk attitude. However, further research in various samples on decisions where health risks play a role is warranted to confirm the dimensionality of the HRAS-13 and the items to be retained in a full or a shorter version

‘We don’t know for sure’: discussion of uncertainty concerning multigene panel testing during initial cancer genetic consultations

Pre-test counseling about multigene panel testing involves many uncertainties. Ideally, counselees are informed about uncertainties in a way that enables them to make an informed decision about panel testing. It is presently unknown whether and how uncertainty is discussed during initial cancer genetic counseling. We therefore investigated whether and how counselors discuss and address uncertainty, and the extent of shared decision-making (SDM), and explored associations between counselors’ communication and their characteristics in consultations on panel testing for cancer. For this purpose, consultations of counselors discussing a multigene panel with a simulated patient were videotaped. Simulated patients represented a counselee who had had multiple cancer types, according to a script. Before and afterwards, counselors completed a survey. Counselors’ uncertainty expressions, initiating and the framing of expressions, and their verbal responses to scripted uncertainties of the simulated patient were coded by two researchers independently. Coding was done according to a pre-developed coding scheme using The Observer XT software for observational analysis. Additionally, the degree of SDM was assessed by two observers. Correlation and regression analyses were performed to assess associations of communicated uncertainties, responses and the extent of SDM, with counselors’ background characteristics. In total, twenty-nine counselors, including clinical geneticists, genetic counselors, physician assistants-in-training, residents and interns, participated of whom working experience varied between 0 and 25 years. Counselors expressed uncertainties mainly regarding scientific topics (94%) and on their own initiative (95%). Most expressions were framed directly (77%), e.g. We don’t know, and were emotionally neutral (59%; without a positive/negative value). Counselors mainly responded to uncertainties of the simulated patient by explicitly referring to the uncertainty (69%), without providing space for further disclosure (66%). More experienced counselors provided less space to further disclose uncertainty (p < 0.02), and clinical geneticists scored lower on SDM compared with o

Challenges in shared decision making in advanced cancer care: a qualitative longitudinal observational and interview study

Background: Patients' preferences and expectations should be taken into account in treatment decision making in the last phase of life. Shared decision making (SDM) is regarded as a way to give the patient a central role in decision making. Little is known about how SDM is used in clinical practice in advanced cancer care. Objective: To examine whether and how the steps of SDM can be recognized in decision making about second- and third-line chemotherapy. Methods: Fourteen advanced cancer patients were followed over time using face-to-face in-depth interviews and observations of the patients' out-clinic visits. Interviews and outpatient clinic visits in which treatment options were discussed or decisions made were transcribed verbatim and analysed using open coding. Results: Patients were satisfied with the decision-making process, but the steps of SDM were barely seen in daily practice. The creation of awareness about available treatment options by physicians was limited and not discussed in an equal way. Patients' wishes and concerns were not explicitly assessed, which led to different expectations about improved survival from subsequent lines of chemotherapy. Conclusion: To reach SDM in daily practice, physicians should create awareness of all treatment options, including forgoing treatment, and communicate the risk of benefit and harm. Open and honest communication is needed in which patients' expectations and concerns are discussed. Through this, the difficult process of decision making in the last phase of life can be facilitated and the focus on the best care for the specific patient is strengthened