Preference Elicitation Techniques Used in Valuing Children’s Health-Related Quality-of-Life: A Systematic Review

Abstract

Background and Objectives Valuing children’s health states for use in economic evaluations is globally relevant and is of particular relevance in jurisdictions where a cost-utility analysis is the preferred form of analysis for decision making. Despite this, the challenges with valuing child health mean that there are many remaining questions for debate about the approach to elicitation of values. The aim of this paper was to identify and describe the methods used to value children’s health states and the specific issues that arise in the use of these methods. Methods We conducted a systematic search of electronic databases to identify studies published in English since 1990 that used preference elicitation methods to value child and adolescent (under 18 years of age) health states. Eligibility criteria comprised valuation studies concerning both child-specific patient-reported outcome measures and child health states defined in other ways, and methodological studies of valuation approaches that may or may not have yielded a value set algorithm. Results A total of 77 eligible studies were identified from which data on country setting, aims, condition (general population or clinically specific), sample size, age of respondents, the perspective that participants were asked to adopt, source of values (respondents who completed the preference elicitation tasks) and methods questions asked were extracted. Extracted data were classified and evaluated using narrative synthesis methods. The studies were classified into three groups: (1) studies comparing elicitation methods ( n = 30); (2) studies comparing perspectives ( n = 23); and (3) studies where no comparisons were presented ( n = 26); selected studies could fall into more than one group. Overall, the studies varied considerably both in methods used and in reporting. The preference elicitation tasks included time trade-off, standard gamble, visual analogue scaling, rating/ranking, discrete choice experiments, best-worst scaling and willingness to pay elicited through a contingent valuation. Perspectives included adults’ considering the health states from their own perspective, adults taking the perspective of a child (own, other, hypothetical) and a child/adolescent taking their own or the perspective of another child. There was some evidence that children gave lower values for comparable health states than did adults that adopted their own perspective or adult/parents that adopted the perspective of children. Conclusions Differences in reporting limited the conclusions that can be formed about which methods are most suitable for eliciting preferences for children’s health and the influence of differing perspectives and values. Difficulties encountered in drawing conclusions from the data (such as lack of consensus and poor reporting making it difficult for users to choose and inter...

Understanding the valuation of paediatric health-related quality of life: a qualitative study protocol

“…A series of steps were undertaken to identify the appropriate candidate HRQoL instruments. This included a literature search 11 and internal consultation within the research team. There was also a formal consultation Open access session with the Decision Maker's Panel (DMP).…”

“…There are several PBMs for measuring adult HRQoL such as the EQ-5D-5L,4 5 SF-6D6–8 and the AQoL 9. As well as instruments specifically designed to measure HRQoL in paediatric populations 10 11. There also exists preference-based instruments such as the CHU-9D,12 EQ-5D-Y13 and the HUI2/HUI3 14 15.…”

The RETRIEVE Checklist for Studies Reporting the Elicitation of Stated Preferences for Child Health-Related Quality of Life

“…There are numerous characteristics that might affect and limit the comparability of evidence on HRQoL and QALYs in children and young people. However, in a recent systematic review of measurement and valuation of child HRQoL [ 3 ], a review of the psychometric performance of generic childhood multi-attribute utility instruments [ 4 ], and a review of the methods used to value child HRQoL [ 8 ], authors concluded that the reporting of such studies is often incomplete and inconsistent. Poor reporting of methods used to value child HRQoL and the values derived makes it difficult for users of these instruments to make informed choices and for decision makers to use the evidence in an informed way.…”

“…The checklist can be used to assess studies that produce value sets for child HRQoL instruments (both generic and disease-specific) for QALY estimation, as well as studies that seek to produce values for a limited number of specific child health states, e.g., described by vignettes, or a selection of states from a disease-specific child patient-reported outcome measure. These types of studies (such as those included in the systematic review by Bailey et al [ 8 ]) have been used in cost-effectiveness models considered by decision-making groups such as the Australian Pharmaceutical Benefits Advisory Committee (PBAC) [ 5 ], and other health technology assessment agencies such as the National Institute for Health and Care Excellence (NICE) and the Canadian Agency for Drugs and Technologies in Health (CADTH).…”

Analytical Considerations When Anchoring Discrete Choice Experiment Values Using Composite Time Trade-Off Data: The Case of EQ-5D-Y-3L

“…In recent years, ordinal methods such as discrete choice experiments (DCEs) have had an increasing role in health valuation [ 12 ]. In the context of child health valuation, DCEs focused on pairwise choices between health states defined by EQ-5D-Y-3L, without a duration attribute, have been seen as particularly useful as they can provide information about the relative importance of different dimensions of health, without any need for respondents to trade-off years of a child’s life.…”