
==== Front
Pharmacoeconomics
Pharmacoeconomics
Pharmacoeconomics
1170-7690
1179-2027
Springer International Publishing Cham

39039378
1415
10.1007/s40273-024-01415-6
Current Opinion
Proxy Preferences and the Values of Children’s Health States
http://orcid.org/0000-0003-0249-3518
Hausman Daniel M. dhausman@cplb.rutgers.edu

https://ror.org/05vt9qd57 grid.430387.b 0000 0004 1936 8796 Rutgers University, Center for Population-Level Bioethics, 112 Paterson Street, Rm 400, New Brunswick, NJ 08901 USA
22 7 2024
22 7 2024
2024
42 10 10651072
4 7 2024
© The Author(s) 2024
2024
https://creativecommons.org/licenses/by-nc/4.0/ Open Access This article is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License, which permits any non-commercial use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc/4.0/.
To assign values to the health states of children, some health economists have suggested relying on the ‘proxy’ preferences among the health states of children expressed by a random sample of the adult population. These preferences have been elicited in several ways, with respondents sometimes asked to express their (adult) preferences among the health states of children, and sometimes asked to imagine themselves as children and to express what they think their preferences would be. This essay discusses three grounds for eliciting the preferences of a random sample of adults that have been suggested as ways to assign values to the health states in the EQ-5D-Y, and criticizes the first two: (1) the evidential ground: the preferences of the population sample are good evidence of how good or bad the health states of children are; (2) the ‘taxpayer’ ground: the adult population has the authority to assign values to health states, therefore their preferences are determinative; and (3) the pragmatic grounds: surveying is straightforward and shifts the responsibility from health economists to the population. I argue that instead of surveying a random sample of the population, health economists should rely on deliberative groups that include older children, experts on children’s health and development, as well as members of the population at large. These groups should engage with the reasons that lie behind preferences among health states.

issue-copyright-statement© Springer Nature Switzerland AG 2024
==== Body
pmcKey Points for Decision Makers

To assign values to health states, economists elicit preferences from a random sample of the adult population because they take the adult population to have the authority to decide, and because they regard those preferences as evidence concerning the value of health states; however, the only strong reasons to elicit preferences in order to assign values to health states are pragmatic.	
Instead of relying on adult ‘proxy’ preferences to assign values to the health states of older children, as recommended by the EQ-5D-Y, health economists should rely on deliberative groups including experts on child health and development, children themselves, and parents and grandparents, who should address the grounds for preferences among health states.	

Introduction

One important factor that should guide health policy is the protection and improvement of people’s health. Many other things matter to health policy, such as rights, fairness, freedom, dignity, autonomy, solidarity, and compassion; however, policies that are not guided by how much they improve health, and at what cost, would be blind and wasteful. Some quantitative and interpersonally comparable measure of the values of health states is needed. In current practice, that measure is derived from surveys of the preferences among health states expressed by a random sample of the adult population. For example, discrete choice techniques ask survey respondents to choose among pairs of health states. Other techniques, such as time trade-offs must be used to place the relative values derived from discrete choices on a ratio scale, with the value of full health set at 1.0 and the value of death at zero. In a time trade-off, survey respondents are asked to express their preferences between shorter life in full health and longer life in diminished health.

Employing techniques such as these, health economists infer the ‘quality weights’ to be assigned health states in some health-state classification, such as the well-known EQ-5D. The overall measure of health is then determined by the values assigned to health states and by the duration in which individuals experience these states. Quality-adjusted life-years (QALYs) are calculated by multiplying the quality weights of health states by the length of time that individuals are in health states.

This way of assigning values to health states seems to be inapplicable to younger children, who may not be able to express preferences among health states and whose preferences may not be a reliable guide to the values of their health. Reliance on the preferences of a random sample of adults as proxies for the preferences of children has struck some health economists as a solution, but this is an unsettled area in health economics, in which there are a variety of approaches [1]. In this essay, I shall focus on the EQ-5D-Y-3L for which there is now an international valuation protocol [2]. I shall argue that eliciting the preferences of a random sample of adults among the health states of children is an unsatisfactory way to assign values to the health states of children. Preference elicitation should play a smaller role in determining the quality weights to assign to the health states of children; the methods of elicitation should not be population surveys; and the informants whose views are consulted should not be a random sample of the adult population. The reasons for this conclusion differ for children of different ages, whose abilities and interests obviously differ enormously.

Most of the literature identifies the quality weight of a health state as its contribution to well-being or its ‘health-related quality of life’ (HRQoL),1 and in this essay I shall follow this literature. However, identifying the value of health with well-being is at best a first approximation. In my view, although a measure of well-being may serve as a helpful scalar indicator of the net personal significance of health problems, the value of health depends on the suffering and activity limits health issues may bring.2 Identifying health with well-being can be misleading, especially in its unfortunate suggestion that activity limitations such as those caused by common disabilities, necessarily make people worse off. Because well-being depends on character traits, talents, environment, and luck, as well as activity limits and distress, well-being and health may diverge.

Why Elicit Preferences

Values are assigned to health states by the extent to which health states satisfy or frustrate preferences. Why? Linking well-being to preference satisfaction is common among economists, who often identify well-being with preference satisfaction. However, the satisfaction of preferences does not constitute well-being: what individuals prefer may be bad for them when, for example, their preferences depend on ignorance or false beliefs.

One response to the obvious problems in identifying well-being and the satisfaction of preferences is to define well-being as the satisfaction of ‘true’ and self-interested preferences that have been suitably laundered of ignorance, false beliefs, altruism, and irrationality. A simpler and less philosophically ambitious possibility is to note that when individuals are rational and self-interested, they will prefer what they believe to be better for themselves. If in addition their factual beliefs are often correct, then they generally prefer what is in fact better for themselves. In that case, what individuals prefer is evidence of what is good for them.

One may reasonably question how reliable this evidence is. When the factual beliefs of individuals are not correct or when they myopically prefer immediate benefits to what will be more beneficial later, then their preferences may not be a good guide to their well-being. Moreover, when health economists survey individuals concerning their preferences among health states, survey respondents are predicting how they would choose if they were to face such decisions. These predictions are fallible. Those who experience diminished health states typically assign different values to them than does the population at large. There are many other well-known problems with relying on population surveys to assign values to health states [7, 8] (ch. 8). Health economists can still hope that the preferences expressed by survey respondents constitute at least some evidence concerning the quality weights to be assigned to health states.

Second, there are strong pragmatic reasons to assign quality weights to health states by surveying a random sample of the adult population. It is comparatively easy to carry out such surveys, and by doing so, health economists can disavow any responsibility for determining the values of health states on to the population. They can say, “The values we are assigning to health are your values. It is not up to economists to question them.”

There is a related third reason to elicit preferences from a random sample of the population, which, like the pragmatic reasons, has nothing to do with whether preferences are evidence for well-being. Because the expense of health care and the evaluation of health states matter to the whole population, it seems plausible to maintain that health-care and public health policies should implement policies that are favored by the preferences of the population, even if those preferences depend on false factual beliefs or cognitive distortions [9]. On this view, rather than surveying the population in order to help determine how bad various health problems may be, health economists carry out surveys in order to figure out what, on average, the populace prefers. On this view, eliciting population preferences is a way of, in effect, taking orders from the population concerning what values to assign to health [2, 10] (p. 654). This view is often described as ‘the taxpayer perspective’.3

From the taxpayer perspective, since the population as a whole has the authority to decide, survey results should be definitive. However, even though the decision on values is ultimately up to the population as a whole, members of the population may doubt that surveying their views is the best way to determine how good or bad health states may be (which is what they want to determine). The members of the population may choose to delegate the assessment of health to some other evaluator who they believe will have better judgment. Indeed, some focus groups and surveys have explicitly criticized deriving health-state values from population preferences [12, 13]. “Members of the public appear intuitively not to support the current widespread practice of using values derived from a potentially uninformed public’s responses to hypothetical health states to inform health resource allocation” [12] (p. 1195). Presumably, members of the population that was surveyed want the assessment of health to indicate as accurately as possible how good or bad health may be and how large are the improvements that treatments provide, and they are skeptical about relying on untutored public opinion.

The empirical studies that I am citing do not fully clarify the issues because they pose the question of how to assess health in an overly narrow way. In a study concerned with measuring children’s health, deliberative groups were asked, “What are the opinions of the general public on whose preferences should be elicited and which perspective should be used when valuing the health-related quality of life (HRQoL) of children and young people?” [14] (p. 2). The only alternatives the question envisions are changes in who is being surveyed or in what perspective those surveyed should take in responding. There is no explicit recognition here that the task is to determine how good or bad health is, not what respondents think. Apart from its pragmatic advantages, assigning values to health states by eliciting preferences is justified only if preferences are good evidence of the values of health states.

Unfortunately, it is questionable whether population preferences are in fact good evidence of value. Time trade-offs pose unfamiliar and difficult questions. Preferences are influenced by ignorance, false beliefs, and a slew of cognitive heuristics and deliberative flaws. It is hard to defer to people’s preferences among health states without at the same time deferring to their often-faulty beliefs about the properties and consequences of those health states.

Proxy Preferences Among Children’s Health States

Faced with the need to measure children’s health, economists have attempted to adapt the tools they use to categorize and value the health of adults.4 It has not been easy! Children at different stages of development differ enormously. Newborns and teenagers are very different beings. Assigning values to the health states of children thus poses many problems, not just one. It is widely recognized that the classifications of health states that have been devised for adults may not be applicable to children. For example, ‘Self-care’, in the EQ-5D is irrelevant to newborns and hard to apply to young children whose inability to tie their shoes is not a health deficiency.

Having defined classification of the health states of older children, which are the concern of the EQ-5D-Y, health economists must then assign values to the health states the EQ-5D-Y defines. Unlike what is the case in valuing the health of young children, who may be incapable of expressing preferences among health states, and whose preferences may not be a good guide to the value of their health states, children in the EQ-5D-Y’s intended age range (8–15 years) are capable of making some comparisons among health conditions. Of course, children often do not know what is good for them, but the same can be said of adults,5 and as children mature, their ability to assess their health increases. Some survey questions may be traumatic for children, but authors such as Powell et al. [14] have argued convincingly for including children increasingly in the valuation of health states as they mature. Mimicking the methods used to assign values of the health states of children, but generally unwilling to rely on the preferences of children, health economists have looked to adult preferences among the health states of children to assign values to the health states in the youth version of the EQ-5D (the EQ-5D-Y). Indeed, on the taxpayer’s view, surveying a random sample of adults would appear to be the correct thing to do. More specifically, to assign values to the health states in the EQ-5D-Y, adults have been asked about their rankings of the health of 10-year-olds, in the hope that the quality weights implicit in the preferences of adult surrogates would be accurate for children and teens from ages 8 to 15 years. It is hoped that adults can function as surrogates for children.

Ways of Eliciting Proxy Preferences

According to the “International Valuation Protocol for the EQ‐5D‐Y‐3L [2] (p. 658), adult surrogates whose preferences among the health states of children are elicited should be asked, “Considering your views about a 10-year-old child, what do you prefer?” This formulation is ambiguous and has been formulated more precisely in three different ways:6Do you prefer the state of affairs in which 10-year-olds are in health state X, or the state of affairs in which they are in health state Y?7

Imagine that you were a 10-year-old. Would you prefer to be in X or Y?8

Do 10-year-olds prefer X or Y?9

The last question does not attempt to elicit the respondents’ preferences. Instead, it asks adults to predict what children prefer. Experts are better able to answer this question than randomly selected members of the population, and, in any case, from the taxpayer’s perspective, what children prefer is irrelevant; option (3) is thus not a good population survey question.

One way to answer option (2)—to decide what I would prefer if I were 10 years of age–would be to determine what 10-year-olds prefer, in which case question (2) collapses into (3) and its answer depends on what I believe about the preferences of 10-year-olds rather than my appraisal of their health. What health economists seek to discover is either evidence concerning how bad health conditions are for children or what ranking of the health states of children the population demands. Question (1), which I think is the most charitable disambiguation of the perspective recommended in the EQ-5D-Y official protocol [10, 30], is asking respondents as adults to assess health states, which is the same task that the health economist is charged with. The second question (2) asks respondents to make believe that they are children and to assess health states as they would if they were children. It asks adults to serve as proxies, ‘voting’ as it were the way they think children would, unlike question (1), which asks for independent adult assessments.

Randomly chosen members of the population are not better able to assess the health of children than are health economists. The benefits of eliciting preferences via question (1) are pragmatic. On the other hand, if individuals can imagine themselves as children, then perhaps in answering question (2) they can provide evidence concerning how good or bad children’s health states are. But there are reasons to doubt. Should adults who are imagining themselves as 10 years of age imagine themselves possessed with the understanding of a 10-year-old or with a more sophisticated adult understanding? Are adults imagining themselves as 10-year-old boys or as 10-year-old girls? In what sort of family and environment should they, or do they, imagine themselves? Does their imagined 10-year-old self have the technology available in 2024 or the technology available at the time when the respondent was 10 years of age?10

Why Elicit the Preferences of a Random Sample of Adults

Why rely on preference surveys either for guidance or for evaluation concerning the value of children’s health? After all, there has to be some way of valuing health other than asking others to do it, or else survey respondents would have no way to answer the questions put to them other than to survey others, and so on, endlessly. One reason to survey a random sample of the population lies in the variety of viewpoints in the population on the health and well-being of children. There are also pragmatic reasons discussed above to rely on the evaluations of a random sample of adults.

However, there are also reasons not to rely on proxy preferences. Unlike individuals judging how bad a hypothetical health state would be for themselves in their own environment with their specific objectives and character, survey respondents assessing the health of others have no epistemic advantage over health economists, apart from their greater diversity. Unlike the preferences individuals express among their own imagined health states, proxy preferences are not anchored on anyone’s circumstances and objectives.

Consider the following analogy. Seeking to learn about compliance with a political plea to save energy, researchers might follow one of the following two procedures. First, they could call some sample of the population and ask them to report on whether their home thermostat is reading above the recommended temperature. Second, they could call some sample of the population and ask them to predict whether they think the temperature in most homes is above the recommended temperature. Both inquiries are obviously fallible, but the first takes advantage of the epistemic advantage individuals have in reporting on their own home temperature, while the second inquiry asks uninformed members of the population to answer the same question the researchers are trying to answer. Although people can be remarkably good at judging those in their social circles [32], if one wants to know to what extent people are saving energy, the second survey is less likely to provide a correct answer.

Of course, there are many ways that the judgments of individuals concerning the value of health states to themselves can go wrong, but there are arguably even more ways that the judgments of others can go wrong. There is a much weaker argument for relying on proxy preferences to determine the values of children’s health states than for assigning values to the health states of adults by eliciting their predictions concerning how they would rank their own health states.11

Alternatives

Although problematic, perhaps surveys of proxy preferences are better ways of assigning values to the health states of children than are any feasible alternatives. To know whether this is the case, one needs to investigate what alternatives there may be. I can think of four:Change the composition of the sample asked to evaluate the health of children. Instead of surveying a random sample of the adult population, health economists could, for example, elicit health-state assessments only from parents or grandparents of children of the relevant ages. Health economists might add pediatricians, child psychologists, and experts on child development to the set of those surveyed. Apart from difficulties shielding children from questions about death or terrible health states, there is also no good reason why children cannot be increasingly engaged in the assessment of the health states of children. There are many possibilities for changing who is to be surveyed.

Determine what criteria in fact guide evaluations of the health of children. Survey respondents presumably have reasons that explain their rankings, even if they do not formulate these reasons explicitly. Identifying the implicit criteria that imply the numbers assigned to health states would bypass some of the distortions in evaluations among health states that are due to ignorance, irrationality, and false factual beliefs, while at the same time remaining responsive to the population’s values.

Ascertain the criteria that ought to be employed to assign values to the states in the EQ-5D-Y. Rather than, or in addition to, investigating the criteria survey respondents in fact employ, philosophers can attempt to find out what criteria ought to determine the values of children’s health states. Ethicists and political philosophers should have something to say about what determines how much and why illness and medical treatment matter and what obligations individuals and institutions have to address health problems.

Rely on small deliberative groups. These groups would include representative members of the population, experts on children’s health and development, and health economists. These groups would be charged with recommending an assignment of quality weights to the EQ-5D-Y’s states, which would then be open to public debate.

These alternatives are vague, and for the pragmatic reasons mentioned above, it may be that the best way to assign quality weights to the health states of older children is to refine the reliance on the surrogate evaluations offered by a random sample of the adult population. Moreover, each of these four alternatives has its problems:Although experts are better informed than members of the population at large, the values of experts may differ from the values of others whose culture, education, and class background differs. Moreover, disagreements concerning who counts as an expert could undermine the acceptability of the health assessments implicit in the preferences of the purported experts.

Presumably health economists do not already employ the evaluative criteria implicit in the preferences of the population, because there are few widely accepted criteria by which to rank health or because there are conflicts over how to specify and prioritize the criteria. By conceiving of the evaluations of health as preferences (which are sometimes conflated with feelings), it has been easy for health economists to ignore the cognitive demands on evaluations. Ferreting out the implicit criteria respondents are employing is challenging, but there have been some intriguing forays [34].

Relying on philosophers to provide the criteria needed to assign quality weights to health states is even more speculative than the second alternative. It is hard to imagine that philosophical theorizing can generate a set of usable criteria for evaluating health.

Relying on deliberative groups is, in my view, the most attractive alternative, in part because it can borrow from the others. Although evaluation via deliberation contrasts with evaluation via surveys, the results of surveys can provide useful inputs into deliberation. Other inputs can be the results of inquiries into what in fact grounds survey responses as well as the outcomes of philosophical inquiries into what criteria ought to govern the evaluation of health states.

If the goal is to determine the value of health, then the point of eliciting preferences is not to implement the will of the populace, regardless of whether the population’s preferences are justified, and despite the pragmatic advantages of surveys, the case for seeking expertise is strong. Moreover, if the goal is to determine the quality weights that ought to be assigned to health states rather than the quality weights that are implicit in the preferences of a random sample of the population, then a population survey, even one that oversamples ‘experts’ is lacking in the contestation and deliberation needed to ascertain values. Hence, despite its vagueness and limitations, I think that the best way to proceed is to rely heavily on the judgment of deliberative groups. Inquiries into the evaluative criteria that do and should govern the assessment of the health of children should also play a role in that assessment.

Spelling out a method for using deliberative groups to assign quality weights to the health states of children is a task for a series of papers (e.g. Baker et al. [35]), not for a paragraph or two here. All that I can do in this essay is to list some of the issues that need to be discussed:Membership: Relatively small numbers but diverse: include experts and non-experts.

Objectives: Determine quality weights to be placed on the health states of children suitable for use in determining cost effectiveness.

Output: Proposed quality weights that should be subject to popular discussion.

Advantages: Allows for deliberation and better information.

Limitations: Risk of ‘capture’ by dominant individuals, poor preparation, biased presentation of information, cultural barriers, manipulation by powerful interests, and questionable legitimacy.

Conclusions

Clearly our concerns with health and health care are part of a larger concern that people flourish, physically, mentally, and emotionally. These concerns go far beyond figuring out how to measure the health of children. However, the quality weights assigned to the health states of children should be consistent with what is known about what enables children to develop physically, mentally, and emotionally, and to enjoy their lives as children. That synthesis calls for a collaboration among experts and representatives of the populace at large, which requires public dialogue coupled with sustained discussion within deliberative groups, or perhaps surveys of experts, parents, and children themselves. Public dialogue coupled either with more selective surveying or deliberative groups would seem to be far preferable to assigning quality weights by eliciting preferences from a random sample of the adult population. However, it is of course an empirical question whether public dialogue would lead to different quality weights.

Measuring children’s health depends on one’s view of what distresses children and what limits what they can do and especially how they can develop and what they can become. Learning a great deal about what children like and about the nourishment, attachment, protection, shelter, stimulation, and socialization they need will not by itself generate quality weights for the health states of children, let alone an account of how children flourish, because, just as there is not one ideal adult life, so there is not one ideal life for a child. However, there are fewer different ways for children to thrive than for adults to thrive, and detailed knowledge of the needs, feelings, and activities of children places tight constraints on acceptable views of their health and well-being [36]. These constraints loosen as children mature, but there is still, I suggest, a reasonable prospect of achieving a deliberative appraisal of children’s health.

Eliciting preferences is a relatively straightforward way to assign quality weights to the health states of adults, but one should have little confidence that the resulting quality weights represent either the values of the population or the actual significance of health states. The preferences expressed by a random sample of the population are distorted by irrationality, ignorance, and false factual beliefs concerning health states. Even though the adult self-evaluations of survey respondents possess some degree of epistemic authority, those surveyed are asked to predict what their preferences would be among health states that in most cases they have never experienced and about which typically they know little. The averages of the different values health states have for different individuals may have little meaning.

In relying on population surveys to assign values to health states other than one’s own, health economists are asking survey respondents to answer the same questions that health economists face, despite the fact that survey respondents are less well situated to answer. Reliance on proxy preferences to assign values to the health states of children is even harder to defend. However, as inputs into deliberation concerning the value of health, information concerning the content and grounds of adult’s evaluation of the health states of others, whether of adults or of children, can be valuable. After determining why adults express the preferences among health states that they do, health economists and others can scrutinize those reasons and investigate whether, when freed of ignorance, error, and irrationality, they provide insights into the value of health. In reflecting on the considerations that are implicit in adult preferences among the health states of children, health economists can make some progress on offering an assessment of children’s health that rests on defensible criteria rather than relying on a tabulation of preferences of adults who are asked to imagine themselves as children. Once one appreciates what is at stake, I think one should conclude that it is only for pragmatic reasons that health economists assign quality weights by eliciting preferences.

Acknowledgements

The author is indebted to Stefan Lipman and the journal's referees for helpful criticisms of a previous draft of this manuscript.

Data availability

There are no data for this paper to be made available.

Declarations

Funding

No sources of funding were used to assist in the preparation of this article.

Conflict of Interest

Daniel M. Hausman has no conflicts of interest to declare that may be relevant to the contents of this manuscript.

1 There is a terminological ambiguity here. Some authors identify the HRQoL of a health state with the scalar quality weight assigned to a health state, while others identify HRQoL with the specification of the health state itself. Germain et al. [3] (p. 6) identify four definitions of HRQoL in the literature. See also Fayed et al. [4] (p. 1091), Huang et al. [5] (p. 748), and Karimi and Brazier [6].

2 It is important to distinguish the distress that is part of the health state from the distress that the health state causes. The anxiety someone has in advance of open-heart surgery is not an aspect of heart functioning but a reaction to the prospective surgery, like the anxiety parents might feel when their child goes rock climbing. On the other hand, the anxiety of someone who is experiencing a panic attack, like the angina pain experienced by the cardiac patient, is an aspect of the health state.

3 Without endorsing this view [11] (p. 977), Lipman et al. mention this argument as one among four possible justifications for relying on preferences of a random sample of adults.

4 See, for example, [15–24].

5 However, unlike in the case of younger children, third parties do not often know better than adults, and we take more seriously the resentment of adults at being told by others how they ought to run their own lives.

6 Karimi and Brazier [6] also discusses an ‘own-adult’ valuation of the states in a classification of children’s health states as if these were adult health states. Of dubious coherence, this would be of value mainly for showing the compatibility between the values assigned in the study and the existing values assigned to similar health states in adult health state classifications. Among the other three perspectives they discuss, ‘other-adult’ and ‘own-child’ correspond to questions (1) and (2) [looking past a serious typographical error]. For a discussion of a wider range of possible perspectives, see Tsuchiya and Watson [25].

7 Option (1) is called the ‘child’s perspective’ by Kreimeier et al. [26] and Craig et al. [10], ‘proxy version 1’ by Kreimeier and Greiner [27], the ‘other child’ perspective by Powell et al. [7] and Lipman et al. [28], and ‘proxy 1’ by Lipman et al. [29].

8 Option (2) is called the ‘self-child’ perspective by Lipman et al. [28] and the ‘own child’ perspective by Powell et al. [7].

9 Option (3) is called ‘proxy version 2’ by Kreimeir and Greiner [27] and ‘proxy 2’ by Lipman et al. [29].

10 To illustrate some of the complexities, consider the following passage from Adam Smith’s Theory of Moral Sentiments [31], I.I.12: “What are the pangs of a mother, when she hears the moanings of her infant that during the agony of disease cannot express what it feels? In her idea of what it suffers, she joins, to its real helplessness, her own consciousness of that helplessness, and her own terrors for the unknown consequences of its disorder; and out of all these, forms, for her own sorrow, the most complete image of misery and distress. The infant, however, feels only the uneasiness of the present instant, which can never be great. With regard to the future, it is perfectly secure, and in its thoughtlessness and want of foresight, possesses an antidote against fear and anxiety, the great tormentors of the human breast, from which reason and philosophy will, in vain, attempt to defend it, when it grows up to a man.”

The mother perceives the child’s health as it would be if the child had mature understanding of its peril, and she assesses it from an adult’s perspective. The child perceives it from a child’s perspective and, if it were capable of assessing it, the child would assess it from a very limited viewpoint, unaffected by fears of the future. Smith attempts to conceive of the child’s health as the child perceives it and then to evaluate it from the perspective of an adult. All the perspectives Smith presents could be described as imagining oneself as the child, but more detail is needed to specify what quality weight should be assigned to the infant’s health state.

11 For poignant examples of the many difficulties adults have in expressing proxy preferences among children’s health states, see Reckers-Droog et al. [33].
==== Refs
References

1. Kwon J Freijser L Systematic review of conceptual, age, measurement and valuation considerations for generic multidimensional childhood patient-reported outcome measures Pharmacoeconomics 2022 40 4 379 431 10.1007/s40273-021-01128-0 35072935
Kwon J, Freijser L, et al. Systematic review of conceptual, age, measurement and valuation considerations for generic multidimensional childhood patient-reported outcome measures. Pharmacoeconomics. 2022;40(4):379–431.35072935 10.1007/s40273-021-01128-0
2. Ramos-Goñi J Oppe M Stolk E Shah K Kreimeier S Rivero-Arias O Devlin N International valuation protocol for the EQ-5D-Y-3L Pharmacoeconomics 2020 38 653 663 10.1007/s40273-020-00909-3 32297224
Ramos-Goñi J, Oppe M, Stolk E, Shah K, Kreimeier S, Rivero-Arias O, Devlin N. International valuation protocol for the EQ-5D-Y-3L. Pharmacoeconomics. 2020;38:653–63.32297224 10.1007/s40273-020-00909-3
3. Germain N Aballéa S Toumi M Measuring health-related quality of life in young children: How far have we come? J Market Access Health Policy 2019 7 1 10.1080/20016689.2019.1618661
Germain N, Aballéa S, Toumi M. Measuring health-related quality of life in young children: How far have we come? J Market Access Health Policy. 2019;7:1. 10.1080/20016689.2019.1618661.10.1080/20016689.2019.1618661
4. Fayed N Camargo O Kerr E Rosenbaum P Dubey A Bostan C Faulhaber M Raina P Cieza A Generic patient-reported outcomes in child health research: a review of conceptual content using World Health Organization definitions Dev Med Child Neurol 2012 54 1085 1095 10.1111/j.1469-8749.2012.04393.x 22913566
Fayed N, Camargo O, Kerr E, Rosenbaum P, Dubey A, Bostan C, Faulhaber M, Raina P, Cieza A. Generic patient-reported outcomes in child health research: a review of conceptual content using World Health Organization definitions. Dev Med Child Neurol. 2012;54:1085–95.22913566 10.1111/j.1469-8749.2012.04393.x
5. Huang I Revicki D Schwartz C Measuring pediatric patient-reported outcomes: good, but a long way to go Qual Life Res 2014 23 747 750 10.1007/s11136-013-0607-2 24362765
Huang I, Revicki D, Schwartz C. Measuring pediatric patient-reported outcomes: good, but a long way to go. Qual Life Res. 2014;23:747–50.24362765 10.1007/s11136-013-0607-2
6. Karimi M Brazier J Health, health-related quality of life, and quality of life: what is the difference? Pharmacoeconomics 2016 34 645 649 10.1007/s40273-016-0389-9 26892973
Karimi M, Brazier J. Health, health-related quality of life, and quality of life: what is the difference? Pharmacoeconomics. 2016;34:645–9.26892973 10.1007/s40273-016-0389-9
7. Powell PA Rowen D Rivero-Arias O Tsuchiya A Brazier JE Valuing child and adolescent health: a qualitative study on different perspectives and priorities taken by the adult general public Health Qual Life Outcomes 2021 19 1 14 10.1186/s12955-021-01858-x 33388064
Powell PA, Rowen D, Rivero-Arias O, Tsuchiya A, Brazier JE. Valuing child and adolescent health: a qualitative study on different perspectives and priorities taken by the adult general public. Health Qual Life Outcomes. 2021;19:1–14.33388064 10.1186/s12955-021-01858-x
8. Hausman D Measuring health: well-being, freedom, and suffering 2015 New York Oxford University Press
Hausman D. Measuring health: well-being, freedom, and suffering. New York: Oxford University Press; 2015.
9. Sugden R The community of advantage 2018 Oxford Oxford University Press
Sugden R. The community of advantage. Oxford: Oxford University Press; 2018.
10. Craig B Brown D Reeve B The value adults place on child health and functional status Value Health 2015 18 449 456 10.1016/j.jval.2015.02.012 26091599
Craig B, Brown D, Reeve B. The value adults place on child health and functional status. Value Health. 2015;18:449–56.26091599 10.1016/j.jval.2015.02.012
11. Lipman S Reckers-Droog V Kreimeier S Think of the children: a discussion of the rationale for and implications of the perspective used for EQ-5D-Y health state valuation Value Health 2021 24 976 982 10.1016/j.jval.2021.01.011 34243841
Lipman S, Reckers-Droog V, Kreimeier S. Think of the children: a discussion of the rationale for and implications of the perspective used for EQ-5D-Y health state valuation. Value Health. 2021;24:976–82.34243841 10.1016/j.jval.2021.01.011
12. Powell P Karimi M Rowen D Hypothetical versus experienced health state valuation: a qualitative study of adult general public views and preferences Qual Life Res 2023 32 4 1187 1197 10.1007/s11136-022-03304-x 36422771
Powell P, Karimi M, Rowen D, et al. Hypothetical versus experienced health state valuation: a qualitative study of adult general public views and preferences. Qual Life Res. 2023;32(4):1187–97.36422771 10.1007/s11136-022-03304-x
13. Richardson J. Welfarism or non-welfarism? Public preferences for willingness to pay versus health maximisation. Monash University Centre for Health Economics. Research Paper 2005 (10)
14. Powell P, Rowen D, Keetharuth A, Mukuria C. Understanding UK public views on normative decisions made to value health-related quality of life in children: a qualitative study. Soc Sci Med. 2024;340:116506.
15. Shah K Ramos-Goñi J Kreimeier S Devlin N An exploration of methods for obtaining 0 = dead anchors for latent scale EQ-5D-Y values Health Econ 2020 21 1091 1103
Shah K, Ramos-Goñi J, Kreimeier S, Devlin N. An exploration of methods for obtaining 0 = dead anchors for latent scale EQ-5D-Y values. Health Econ. 2020;21:1091–103.
16. Wille N Badia X Bonsel G Burström K Cavrini G Devlin N Development of the EQ-5D-Y: a child-friendly version of the EQ-5D Qual Life Res 2010 19 875 886 10.1007/s11136-010-9648-y 20405245
Wille N, Badia X, Bonsel G, Burström K, Cavrini G, Devlin N, et al. Development of the EQ-5D-Y: a child-friendly version of the EQ-5D. Qual Life Res. 2010;19:875–86.20405245 10.1007/s11136-010-9648-y
17. Eiser C Morse R A review of measures of quality of life for children with chronic illness Arch Dis Child 2001 84 205 211 10.1136/adc.84.3.205 11207164
Eiser C, Morse R. A review of measures of quality of life for children with chronic illness. Arch Dis Child. 2001;84:205–11.11207164 10.1136/adc.84.3.205
18. Matza L Swensen A Flood E Secnik K Leidy N Assessment of health-related quality of life in children: a review of conceptual, methodological, and regulatory issues Value Health. 2004 7 79 92 10.1111/j.1524-4733.2004.71273.x 14720133
Matza L, Swensen A, Flood E, Secnik K, Leidy N. Assessment of health-related quality of life in children: a review of conceptual, methodological, and regulatory issues. Value Health. 2004;7:79–92.14720133 10.1111/j.1524-4733.2004.71273.x
19. Raat H Bonsel G Essink-Bot M Landgraf J Gemke R Reliability and validity of comprehensive health status measures in children: the child health questionnaire in relation to the health utilities index J Clin Epidemiol 2002 55 67 76 10.1016/S0895-4356(01)00411-5 11781124
Raat H, Bonsel G, Essink-Bot M, Landgraf J, Gemke R. Reliability and validity of comprehensive health status measures in children: the child health questionnaire in relation to the health utilities index. J Clin Epidemiol. 2002;55:67–76.11781124 10.1016/S0895-4356(01)00411-5
20. Ravens-Sieberer U Erhart M Wille N Wetzel R Nickel J Bullinger M Generic health-related quality of life assessment in children and adolescents: methodological considerations Pharmacoeconomics 2006 24 1199 1220 10.2165/00019053-200624120-00005 17129075
Ravens-Sieberer U, Erhart M, Wille N, Wetzel R, Nickel J, Bullinger M. Generic health-related quality of life assessment in children and adolescents: methodological considerations. Pharmacoeconomics. 2006;24:1199–220.17129075 10.2165/00019053-200624120-00005
21. Ravens-Sieberer U Wille N Badia X Bonsel G Burström K Cavrini G Feasibility, reliability, and validity of the EQ-5D-Y: results from a multinational study Qual Life Res 2010 19 6 887 897 10.1007/s11136-010-9649-x 20401552
Ravens-Sieberer U, Wille N, Badia X, Bonsel G, Burström K, Cavrini G, et al. Feasibility, reliability, and validity of the EQ-5D-Y: results from a multinational study. Qual Life Res. 2010;19(6):887–97. 10.1007/s11136-010-9649-x.20401552 10.1007/s11136-010-9649-x
22. Shiroiwa T Ikeda S Noto S Fukuda T Stolk E Valuation survey of EQ-5D-Y based on the International Common Protocol: development of a value set in Japan Med Decis Making 2021 41 597 606 10.1177/0272989X211001859 33754886
Shiroiwa T, Ikeda S, Noto S, Fukuda T, Stolk E. Valuation survey of EQ-5D-Y based on the International Common Protocol: development of a value set in Japan. Med Decis Making. 2021;41:597–606.33754886 10.1177/0272989X211001859
23. Varni J Burwinkle T Lane M Health-related quality of life measurement in paediatric clinical practice: an appraisal and precept for future research and application Health Qual Life Outcomes 2005 3 34 10.1186/1477-7525-3-34 15904527
Varni J, Burwinkle T, Lane M. Health-related quality of life measurement in paediatric clinical practice: an appraisal and precept for future research and application. Health Qual Life Outcomes. 2005;3:34. 10.1186/1477-7525-3-34.15904527 10.1186/1477-7525-3-34
24. Verrips E Vogels C Koopman H Theunissen N Kamphuis S Fekkes M Measuring health-related quality of life in a child population Eur J Public Health 1999 9 188 193 10.1093/eurpub/9.3.188
Verrips E, Vogels C, Koopman H, Theunissen N, Kamphuis S, Fekkes M, et al. Measuring health-related quality of life in a child population. Eur J Public Health. 1999;9:188–93.10.1093/eurpub/9.3.188
25. Tsuchiya A Watson V Re-thinking ‘The different perspectives that can be used when eliciting preferences in health’ Health Econ 2017 26 e103 e107 10.1002/hec.3480 28322480
Tsuchiya A, Watson V. Re-thinking ‘The different perspectives that can be used when eliciting preferences in health.’ Health Econ. 2017;26:e103–7.28322480 10.1002/hec.3480
26. Kreimeier S Oppe M Ramos-Goñi J Cole A Devlin N Herdman M Valuation of EuroQol five-dimensional questionnaire, youth version (EQ-5D-Y) and EuroQol five-dimensional questionnaire, three-level version (EQ-5D-3L) health states: the impact of wording and perspective Value Health 2018 21 1291 1298 10.1016/j.jval.2018.05.002 30442276
Kreimeier S, Oppe M, Ramos-Goñi J, Cole A, Devlin N, Herdman M, et al. Valuation of EuroQol five-dimensional questionnaire, youth version (EQ-5D-Y) and EuroQol five-dimensional questionnaire, three-level version (EQ-5D-3L) health states: the impact of wording and perspective. Value Health. 2018;21:1291–8.30442276 10.1016/j.jval.2018.05.002
27. Kreimeier S Greiner W EQ-5D-Y as a health-related quality of life instrument for children and adolescents: the instrument's characteristics, development, current use, and challenges of developing its value set Value Health 2019 22 31 37 10.1016/j.jval.2018.11.001 30661631
Kreimeier S, Greiner W. EQ-5D-Y as a health-related quality of life instrument for children and adolescents: the instrument’s characteristics, development, current use, and challenges of developing its value set. Value Health. 2019;22:31–7.30661631 10.1016/j.jval.2018.11.001
28. Lipman S Reckers-Droog V Karimi M Attema A Self vs. other, child vs. adult. an experimental comparison of valuation perspectives for valuation of EQ-5D-Y-3L health states Eur J Health Econ 2021 22 1507 1518 10.1007/s10198-021-01377-y 34611793
Lipman S, Reckers-Droog V, Karimi M, Attema A. Self vs. other, child vs. adult. an experimental comparison of valuation perspectives for valuation of EQ-5D-Y-3L health states. Eur J Health Econ. 2021;22:1507–18.34611793 10.1007/s10198-021-01377-y
29. Lipman S Brigitte A Essers A Finch A Sajjad A Stalmeier P In a child’s shoes: composite time trade-off valuations for EQ-5D-Y-3L with different proxy perspectives Pharmacoeconomics 2022 40 Suppl 2 S181 S192 10.1007/s40273-022-01202-1
Lipman S, Brigitte A, Essers A, Finch A, Sajjad A, Stalmeier P, et al. In a child’s shoes: composite time trade-off valuations for EQ-5D-Y-3L with different proxy perspectives. Pharmacoeconomics. 2022;40(Suppl 2):S181–92. 10.1007/s40273-022-01202-1.10.1007/s40273-022-01202-1
30. Devlin N Pan T Kreimeier S Verstraete J Stolk E Rand K Valuing EQ-5D-Y: the current state of play Health Qual Life Outcomes 2022 20 105 10.1186/s12955-022-01998-8 35794607
Devlin N, Pan T, Kreimeier S, Verstraete J, Stolk E, Rand K, et al. Valuing EQ-5D-Y: the current state of play. Health Qual Life Outcomes. 2022;20:105. 10.1186/s12955-022-01998-8.35794607 10.1186/s12955-022-01998-8
31. Smith A The theory of moral sentiments. 1759 Rpt 1982 Indianapolis Liberty Press
Smith A. The theory of moral sentiments. 1759 Rpt. Indianapolis: Liberty Press; 1982.
32. Galesic M de Bruin W Dalege J Feld S Kreuter F Olsson H Human social sensing is an untapped resource for computational social science Nature 2021 595 7866 214 222 10.1038/s41586-021-03649-2 34194037
Galesic M, de Bruin W, Dalege J, Feld S, Kreuter F, Olsson H, et al. Human social sensing is an untapped resource for computational social science. Nature. 2021;595(7866):214–22.34194037 10.1038/s41586-021-03649-2
33. Reckers-Droog V Karimi M Lipman S Verstraete J Why do adults value EQ-5D-Y-3L health states differently for themselves than for children and adolescents: a think-aloud study Value Health. 2022 25 1174 1184 10.1016/j.jval.2021.12.014 35168891
Reckers-Droog V, Karimi M, Lipman S, Verstraete J. Why do adults value EQ-5D-Y-3L health states differently for themselves than for children and adolescents: a think-aloud study. Value Health. 2022;25:1174–84.35168891 10.1016/j.jval.2021.12.014
34. Karimi M Brazier J Paisley S How do individuals value health states? A qualitative investigation Soc Sci Med 2017 172 80 88 10.1016/j.socscimed.2016.11.027 27912142
Karimi M, Brazier J, Paisley S. How do individuals value health states? A qualitative investigation. Soc Sci Med. 2017;172:80–8.27912142 10.1016/j.socscimed.2016.11.027
35. Baker R Mason H McHugh N Donaldson C Public values and plurality in health priority setting: What to do when people disagree and why we should care about reasons as well as choices Soc Sci Med 2021 277 113892 10.1016/j.socscimed.2021.113892 33882440
Baker R, Mason H, McHugh N, Donaldson C. Public values and plurality in health priority setting: What to do when people disagree and why we should care about reasons as well as choices. Soc Sci Med. 2021;277: 113892. 10.1016/j.socscimed.2021.113892.33882440 10.1016/j.socscimed.2021.113892
36. Forrest M Christopher D Simpson L Clancy C Child health services research: challenges and opportunities JAMA 1997 277 1787 1793 10.1001/jama.1997.03540460051032 9178792
Forrest M, Christopher D, Simpson L, Clancy C. Child health services research: challenges and opportunities. JAMA. 1997;277:1787–93.9178792 10.1001/jama.1997.03540460051032
