Taking into Account Patient Preferences: A Consensus Study on the Assessment of Psychological Dimensions Within Patient Preference Studies

Abstract

Patient preferences are gaining recognition among key stakeholders involved in benefit-risk decision-making along the medical product lifecycle. However, one of the main challenges of integrating patient preferences in benefit-risk decision-making is understanding differences in patient preference, which may be attributable to clinical characteristics (eg age, medical history) or psychosocial factors. Measuring the latter may provide valuable information to decision-makers but there is limited guidance regarding which psychological dimensions may influence patient preferences and which psychological instruments should be considered for inclusion in patient preference studies. This paper aims to provide such guidance by advancing evidence and consensus-based recommendations and considerations. Findings of a recent systematic review on psychological constructs having an impact on patients’ preferences and health-related decisions were expanded with input from an expert group (n = 11). These data were then used as the basis for final recommendations developed through two rounds of formal evaluation via an online Delphi consensus process involving international experts in the field of psychology, medical decision-making, and risk communication (n = 27). Three classes of recommendations emerged. Eleven psychological constructs reached consensus to be recommended for inclusion with the strongest consensus existing for health literacy, numeracy, illness perception and treatment-related beliefs. We also proposed a set of descriptive and checklist criteria to appraise available psychological measures to assist researchers and other stakeholders in including psychological assessment when planning patient preference studies. These recommendations can guide researchers and other stakeholders when designing and interpreting patient preference studies with a potential high impact in clinical practice and medical product benefit-risk decision-making processes.

Preference Variation: Where Does Health Risk Attitude Come Into the Equation?

“…In addition, one could research the relationship between health preference heterogeneity and measures that use a narrower definition of risk attitude (eg, the standard gamble method [52][53][54] or the Balloon Analog Risk Task 55 ). Such studies can confirm whether indeed health-risk attitude is not linked to preferences as strongly as anticipated 12,13 or whether it could be explained by the relatively low levels of variance in the HARS-13 scores in the case studies. As outlined in the Methods section, we do recommend sticking to a health-specific measure of risk attitude.…”

“…In the study where health literacy affected class allocation, one of the risk attributes was described in words. Moreover, numeracy and literacy were among the characteristics that improved external validity when accounted for in preference heterogeneity in de Bekker-Grob et al 28 and among the psychological constructs with the strongest consensus to be included in preference studies in the review of Russo et al 12 Our results suggest that risks are in some way related to preference heterogeneity, either directly when health-risk attitude distinguishes people's preferences within classes or indirectly when people have varying levels of numeracy and literacy.…”

“…7,8 Insights into the relationship between risk attitude and preference heterogeneity in health can improve the accuracy with which uptake and adherence to treatment are predicted. 9,10 In addition, they can be informative when alternatives largely vary in terms of benefit-risk or when treatment outcomes are highly uncertain, 11,12 for example, by providing information tailored to varying health risk attitudes in clinical practice or for patient subgroup considerations in benefit-risk assessments. Although researchers generally agree that risk attitude plays a role in healthcare decision making, there is no consensus on how to operationalize it.…”

“…They identified risk attitude as 1 important, yet marginally studied, factor relating to preference heterogeneity; experts agreed with this assessment. 12 Furthermore, studies that assess risk in health-related DCEs focus on risk communication rather than risk attitude. 26,27 Although individual characteristics such as health numeracy, health literacy, and decision-making style (also identified by Russo et al 12 ) are increasingly found to be related to preference heterogeneity, 28,29 the complexities associated with the operationalization of risk attitude hamper studying the relationship between risk attitude and preference heterogeneity.…”

“…12 Furthermore, studies that assess risk in health-related DCEs focus on risk communication rather than risk attitude. 26,27 Although individual characteristics such as health numeracy, health literacy, and decision-making style (also identified by Russo et al 12 ) are increasingly found to be related to preference heterogeneity, 28,29 the complexities associated with the operationalization of risk attitude hamper studying the relationship between risk attitude and preference heterogeneity. 13 Therefore, the purpose of this study is to determine whether and how health-risk attitude and heterogeneity of health preferences are related by means of 3 case studies, using the relatively new 13-item Health-Risk Attitude Scale (HRAS-13), which aims to overcome some of the operational complexities.…”