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Acceptability of less than perfect health states
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Social Science & Medicine 60 (2005) 237–246
Acceptability of less than perfect health states Werner B.F. Brouwer*, N. Job A. van Exel, Elly A. Stolk Institute for Medical Technology Assessment, Erasmus University Rotterdam, PO Box 1738, 3000 DR Rotterdam, The Netherlands Available online 19 June 2004
Abstract Health normally deteriorates beyond a certain age. This means, in Amartya Sen’s terms, that one’s health capabilities decline beyond a certain age, making it more difficult to achieve functionings such as mobility or sexual activity. In this paper, we investigate whether this normal reduction in quality of life also induces less than perfect health states to be considered acceptable at advanced stages of life. In other words, we investigate whether it is considered acceptable that health capabilities decline over time. In this study, we use domain-specific descriptions of health (mostly following the EQ-5D domains) in order to investigate whether the acceptability of less than perfect health states is similar for all types of health losses. Besides a theoretical consideration of this issue, we present some empirical evidence based on the answers of 226 respondents to a web-based survey. The results show that often individuals do indeed consider less than perfect health states acceptable, especially at more advanced stages of life. Mild health problems are more often considered acceptable than severe health problems. The acceptability of health states is related to the quality of life score of these states, i.e., worse states are considered less acceptable. This may have implications for the allocation of scarce health care resources. r 2004 Published by Elsevier Ltd. Keywords: Health states; Acceptability; Right to health care; Rationing
Introduction It is quite normal that ones health deteriorates beyond a certain age. This means—in Sen’s terms—that one’s health capabilities decline beyond a certain age, making it more difficult to achieve functionings such as self-care or mobility. Indeed, a 90-year old, who still manages to walk to and from a nearby grocery, will encounter admiration for this accomplishment while it is considered a normal activity for most 30-year olds. Seemingly, it is considered normal to be able to walk about freely up till a certain age, but after that age the same level of mobility is considered to be an indication of above average health. Apparently, people hold age-specific reference points for mobility. If reference points for what good health entails shift with age, this raises the *Corresponding author. Tel.: +31-10-408-2507; fax: +3110-408-9094. E-mail address: [email protected] (W.B.F. Brouwer). 0277-9536/$ - see front matter r 2004 Published by Elsevier Ltd. doi:10.1016/j.socscimed.2004.04.032
interesting question for economic evaluations and priority setting whether less than perfect health states might be considered acceptable at advanced stages of life. In other words, whether it is considered acceptable that health capabilities decline over time. The fact that the decline of health is related to age, makes this particularly interesting, since the decline is therefore universal and not more or less exceptional as for the health decline related to other factors (such as gender, unhealthy life styles, socio-economic health differences, etc.). This may strengthen the acceptability of reduced health capabilities, as it can be seen as a normal part of the ageing process we are all subject to. The assertion that health declines beyond a certain age is certainly not new, both as a fact of life (e.g., Kind, Hardman, & Macran, 1999) and as a methodological problem in the calculation of health gains and losses (e.g., Fryback & Lawrence, 1997; Bleichrodt, Herrero, & Pinto, 2002). Nevertheless, as far as we know it has never been investigated whether such reductions in
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health in advanced stages of life are considered acceptable. Are there less than perfect health states, which are considered acceptable for older persons, yet unacceptable for younger ones? Do we feel that the health capabilities of the young should be more elaborate than those of the old? And can we identify an age after which having some problems with functionings such as self-care or mobility is considered acceptable? These issues clearly relate to distributional preferences for health care in society and whether normal deterioration of health plays a role in these preferences. These distributive preferences and how to assess them are a much discussed topic in the recent health economic literature (Williams & Cookson, 2000; Anand & Wailoo, 2000; Dolan & Olsen, 2002). It is well known that distributional preferences for treating the young over the old exist in society (e.g., Williams, 1997). We assert that this may have to do with the fact that some states are considered more acceptable in the old than in the young. If so, this may have implications for the way in which health state valuations should be elicited and how to value health changes at different stages in life. In this paper, we therefore focus on acceptability of less than perfect health states. Our main question is whether less than perfect health states can be considered acceptable, and whether this acceptability is age related. If less than perfect health states are considered acceptable in some instances, and more so in the elderly than in the young, this may have implications for the allocation of scarce health care resources. The structure of the paper is as follows. The following section provides some theoretical background concerning the concept of reference points for health within the context of health care rationing. The penultimate section will present the results of a web-based survey that was undertaken to empirically test the acceptability of less than perfect health states at different ages. The ultimate section concludes.
Acceptability of health states at different ages Good health means different things at different ages. As discussed in the introduction, people implicitly seem to refer to certain reference points for health that are age dependent. (Deviations from some reference point as starting point for assessing the goodness of a certain state were introduced by Kahneman and Tversky (1979) as core of their prospect theory.) Probably, this has much to do with the fact that people expect and accept that normally health deteriorates beyond a certain age, although this may be truer for some health domains than for others (e.g., mobility may decline more obviously than mental health and being in pain may be considered to be equal at all ages). On a QALY scale,
this implies that beyond a certain age, people move away from perfect health (Kind et al., 1999). Possible (domain specific) reference points for health lead to some interesting issues and problems, some of which have been discussed in the literature, but others have not received much attention so far. Fryback and Lawrence (1997) point out that the use of perfect health as an anchor point misrepresents the true health gains in economic evaluations of health care interventions, especially interventions aimed at elderly. This is the case because older patients will normally not return to perfect health after being cured from some ailment. Therefore, over-estimations of health gains occur and Fryback and Lawrence propose as a solution to use age-specific reference scores for health to calculate health gain. This of course also raises the question whether people strive for a perfect or rather for an acceptable (or normal) health state. Bleichrodt et al. (2002) point out that if the latter is the case, this implies that health state valuation may be a relative rather than an absolute process. The valuation of different health states should then be dependent on expectations and abilities of individuals. Nord, Pinto, Richardson, Menzel, and Ubel (1999) also refer to this ‘potential to benefit’. As Bleichrodt et al. (2002) put it: The problemyis that the set of attainable health states differs across people. For instance, the set of attainable health states of a permanently paralysed individual is different from the set of attainable health states of a healthy individual, which can lead to different valuations for a similar change in health. Bleichrodt et al. (2002) propose a method of correcting for such differences, making health state valuations comparable across different people. The phenomenon of changing sets of attainable health states and shifting reference points for health is intriguingly present in the process of ageing. Although there may be reference points for health for specific patient groups (e.g., those born blind), all of us (assuming an average life span) will experience deterioration of health beyond a certain age. As time passes, we descend the QALY ladder, and we seem to cope with it. We adapt to our new, reduced health states as time goes by and compare ourselves to relevant others to see how we should evaluate our health (e.g., Bleichrodt et al., 2002). This group of relevant others will most likely consist of comparable individuals of similar age as ourselves. This implies that the 90-year old with only mild problems with mobility and self-care may consider himself to be ‘lucky’ within his health reference group, while a 30-year old in the same health condition may consider himself ‘unlucky’ in his reference group. In Sen’s terms: at different ages a different set of health capabilities are considered to be the reference point. At more advanced stages of life, we do not expect to have the health capabilities of a 30-year old or to enjoy the
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same functionings related to health capabilities. Moreover, we all know that this deterioration of health capabilities will occur, and therefore, as a society we have some expectation about what is normal health in different age groups. Indeed, the fact that our reference point for health is not equal for young and old indicates a process of collective ‘anticipative coping’. Therefore, the deterioration and coping on an individual level may translate in reference points for normal health at different ages at the societal level. An important question here is whether the fact that health normally reduces with age (beyond a certain point anyway) also implies that we find it more acceptable that elderly are in worse health states than the young. We may feel it is (privately and socially) acceptable that a 90-year old can no longer walk for more than 3 miles, while we do consider this health state unacceptable for a 30-year old, because in the latter case the health level falls short of our reference point for health at the age of 30. Furthermore, the acceptability of less than perfect health states may depend on the specific health capabilities—quality of life dimensions—lost. For instance, reduced mobility may be considered a normal part of ageing, yet feeling depressed or having pain may not. It may therefore be less useful to look at QALY levels for the determination of acceptable health states and more useful to look at which types of health losses are considered acceptable at different ages. Some health capabilities may be considered ‘ageless’ (e.g., being pain free) while others may be more age-dependent (e.g., being mobile). It is also important here, following Sen (1985) (see also Culyer, 1990), to distinguish between capabilities, resources and functionings. The functioning of walking about depends on one’s health capabilities in the mobility dimension—e.g., being able to walk about. What we are concerned with here is not whether we would wish to restore this functioning, but the health capability of being able to walk yourself. The functioning could also be restored by providing an elderly person with an additional (health care) resource such as some walking aid, but we are especially concerned with restoring the intrinsic health capabilities. If it is true that a similar level of health is perceived differently for people of different ages or with different reference groups, we might wish to explore which reduction in health capabilities is still considered acceptable at different ages. Such exploration may especially be important in the context of health care rationing. If there are age-specific acceptability-levels for less than perfect health states, we may be willing to pay more for health gains that occur in people well below this level than for similar gains in people just below or even at or beyond this level (Stolk, Brouwer, & Busschbach, 2002a; Stolk, Poley, Brouwer, & Busschbach, 2002b). It has been argued on various occasions that the necessity or priority of treatment may be
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dependent on the initial level of quality of life (e.g., Nord et al., 1999; Dolan & Olsen, 2002; Stolk et al., 2002a). Indeed, it seems that necessity plays an important role in practical decision-making (Stolk et al., 2002b). The lower people initially are on the QALY scale, the higher the perceived necessity of treatment is. However, such an argument would suggest that more funds should be allocated to the elderly instead of the young, since the elderly normally are in worse health states than the young. Apart from considerations of length of enjoying the effects of an intervention (the young benefit longer than the old normally do) and other normative considerations such as the fair innings argument1 (e.g., Williams, 1997)— which by the way does not discriminate on a health domain level—this ignores the fact that worse health states are perhaps considered normal for the old, but not for the young. If so, the difference between the age and domain-specific reference point for health and actual health should perhaps determine the necessity of treatment. We therefore hypothesise that unacceptable health states may be considered a (stronger) indication for medical treatment than less than perfect yet acceptable health states (with the same priority)—that may be seen as part of the normal ageing process.2 This closely relates to the proposition of Fryback and Lawrence (1997) to use average age-specific QALY scores as anchor points for economic evaluation. The idea here, however, is more normative than pragmatic: Society must strive to bring individuals ‘back to normal’ in terms of domain-specific acceptable health states rather than back to perfect health. Concepts like good health and necessity of care therewith become relative rather than absolute concepts. The consequence of this line of reasoning, to paraphrase Weinstein (1988), is that a QALY is not a QALY is not a QALY. At this moment, there already are some powerful concepts, such as fair innings, which argue that QALYs are valued differently when won in different people. The concept of acceptable health states—if it indeed is demonstrated to exist—may add to the notion that it matters to whom QALY gains accrue. In the remainder of this paper, we will therefore investigate whether less than perfect health states are considered acceptable (at certain ages) and whether this acceptability is age dependent and varies by health domain. If so, this may imply that health gains in people in unacceptable health states are valued higher than 1
The fair innings argument by the way will often also work in favour of the more severe patients—though not always. 2 In fact, in the Netherlands, such a prioritisation rule has been put forward in 1989, yet operationalisation proved difficult (Commissie Keuzen in de Zorg, 1991). Currently, a QALY-based operationalisation of the concept of necessity is being developed and tested (Stolk et al., 2002b).
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those gained in people in (more) acceptable states and that the value of some health gains may be overestimated in economic appraisal. Whether these differences in valuation also occur is not investigated here. This is seen as a logical next step if (some) less than perfect health states indeed are considered acceptable at some ages.
Putting it to the test Survey In order to test whether the acceptability of less than perfect health states indeed exists, we conducted a webbased survey. Next to some general information such as age, gender and health state, we asked respondents about the acceptability of different health states at different ages. Our meaning of the term ‘acceptability’ was made clear by providing an example in which it was explained that we were looking at acceptability in terms of coping with a less than perfect health state and accepting it as ‘normal deterioration’. For the elicitation of acceptability of less than perfect health states at different ages we used health state descriptions from the EQ-5D (The EuroQol Group, 1999; see also www.euroqol.org). The EQ-5D distinguishes between five health domains, i.e., ‘‘mobility’’, ‘‘self-care’’, ‘‘usual activities’’, ‘‘pain/discomfort’’, and ‘‘anxiety/depression’’, and three health state levels for each health domain corresponding to ‘‘no problems’’, ‘‘mild problems’’ and ‘‘severe problems’’. By using health domains rather than an overall QALY score, we can investigate whether acceptability of less than perfect health states is similar for all types of health losses. This may be important, since deterioration in some health domains may be considered less related to age and therefore not to vary (as much) with age than others. We instructed the respondents to focus on the presented health problems, explicitly instructing them to assume no problems in all other health domains. The questions referring to health domains therefore implicitly reflected health states in the EQ-5D nomenclature of for example 21111 and 11311. Although one may argue that not all of these health profiles are very realistic we felt it to be important to vary only one health domain per question in order to be better able to interpret the provided answers—e.g., whether one particular type of health problem is more acceptable at an older age than at a younger age. One may for instance argue that being depressed is equally undesirable for people of all ages, but that having difficulties walking about is more acceptable for elderly. By doing so, acceptability of health states is implicitly related to reference points for normal (or acceptable) health at different ages.
Furthermore, we added two additional health domains, i.e., ‘‘sexual activity’’ and ‘‘female fertility’’. These health domains were added because the age specificity of acceptable reductions in these health domains was expected to be relatively large. Moreover, these health domains are typically controversial, especially in terms of reimbursement of treatments related to health losses in these domains, e.g., sildenafil (ViagraTM) and IVF (see Appendix A for more details on the questionnaire). In the survey, we asked respondents to indicate from what age onward they considered mild and severe problems in each of the seven health domains to be acceptable by ticking an age group in the range from 30 to 80 years and older (in 10 years intervals). Alternatively, respondents could indicate they never found a certain health state acceptable, regardless of age. The questionnaire is summarised in Appendix A. The respondents A total of 400 respondents, a random selection of individuals registered with a web-survey organisation, were approached to participate in our study by means of email. A total of 226 respondents completed the webbased survey (response rate of 56.5%). Table 1 presents some characteristics of our sample. The study sample appears to be reasonably representative for the Dutch population. The sample did not significantly differ from the general population in regard to the gender distribution, educational level, marital status, income and usual activities, or family composition. The distribution across age groups, however, differed statistically significant from the distribution in the general population (po0.001). Perhaps not surprising for a web-based survey, people between 21 and 40 years of age were over-represented (they made out 66% of our sample instead of the expected 49%), while people between 51 and 70 years of age were underrepresented (8.9% instead of the expected 26.5%). The mean age of the respondents was 36.9 years (range 18– 65). Also the health state of our sample was representative for the Dutch population (Stolk & Busschbach, submitted). The results Table 2 presents the elicitations of the 226 respondents regarding the acceptability of certain levels of impaired functioning at different ages (see also Fig. 1). Our main hypotheses were that (i) less than perfect health states would be considered acceptable relatively often in advanced stages of life, (ii) the acceptability of less than perfect health states would be health domain specific and (iii) (therefore) dependent on the quality of life score of those states.
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Table 1 Study sample characteristics (n ¼ 226) Personal characteristics Age (mean; range) Gender (% female) Nationality (% Dutch)
36.9 54.9 97.8
Education level Primary or secondary school (%) Lower or middle vocational Higher vocational or university
19.0 46.0 35.0
Daily activity Full-time employed (%) Part-time employed Education/school Other
47.3 20.4 18.1 14.1
Income level Up to 20,000 euro (gross, per year) 20,000–25,000 euro 25,000–40,000 euro 40,000 euro or more Missing
12.8 15.0 31.0 10.2 30.9
Marital status Married/living together Single/divorced/widow Other
61.1 29.2 9.6
Health characteristics EQ-VAS (mean; 95% CI) EQ-5D (mean; 95% CI)
73.3 0.85
Health lifestyle ‘‘I live healthier than most other people’’ (%) ‘‘I live as healthy as most other people’’ ‘‘I live less healthy than most other people’’
8.0 78.3 13.7
Smoking (% five cigarettes a day or more)
39.4
At first glance, respondents indicated that almost all less than perfect health states are considered acceptable beyond a certain age, and that the level of acceptance of less than perfect health states increases with age. When looking more specifically to the different health domains, Table 2 shows that a large majority of the respondents considers moderate levels of impairment (EQ-5D score 2) acceptable on all health domains except for ‘‘anxiety/depression’’. Almost 47% of the respondents indicates never to find moderate anxiety or depression acceptable. Interestingly, this type of health loss is also considered to be acceptable at early stages of life most frequently (i.e., 15.1% of the respondents finds moderate anxiety or depression acceptable at age 30). This may indicate that respondents consider these health problems to be relatively normal at a younger age. The fact that relatively many respondents indicate to
18–65
70.4–76.3 0.82–0.87
consider this type of problem acceptable at the age of 30, may also reflect to some extent that some respondents find this acceptable at any given age (since 30 was the first category they could choose). For all other health domains, including the category ‘‘pain/discomfort’’, the percentage of respondents indicating to never consider moderate health problems acceptable, does not rise above 16.4%. Anxiety and depression appear to be considered as either too severe conditions to be acceptable or not as a normal part of ageing and therefore an unacceptable health state even at advanced stages of life. This can, however, not be explained by the corresponding EQ-5D reference score (Dolan, 1997) for this health state (see Table 2), which is comparable to that of having mild problems with mobility or undertaking usual activities. In that sense, the results for pain/discomfort are also surprising.
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Table 2 Acceptability of less than perfect health states beyond a certain age in percentage of respondents, median in bold (n ¼ 226) Health domain
Domain-specific health state
Acceptability of domain-specific health state at age ofy (%)
Acceptable from agea (s.d.)
Description
QALY scoreb
30 yr
40 yr
50 yr
60 yr
70 yr
80 yr
Never
Mobility
Mild problems Confined to bed
0.85 0.34
4.9 2.7
0.9 —
3.5 —
17.7 3.1
39.4 11.5
22.1 31.0
11.5 51.8
67.2 (12.3) 73.6 (12.1)
Self-care
Mild problems Severe problems
0.82 0.44
3.5 3.1
0.9 0.9
1.8 0.4
5.3 2.2
30.5 9.3
42.5 40.3
15.5 43.8
72.0 (11.8) 73.9 (12.9)
Usual activities
Mild problems Severe problems
0.88 0.56
6.6 5.3
1.3 0.4
4.4 0.9
20.8 4.9
33.6 15.5
21.2 30.5
11.9 42.5
65.6 (13.5) 70.2 (15.0)
Pain/discomfort
Moderate Extreme
0.80 0.26
11.9 5.3
5.3 1.3
10.2 2.7
15.9 5.8
24.3 11.1
15.9 17.7
16.4 56.2
59.9 (16.5) 65.8 (16.8)
Anxious/depressed Moderate Extreme
0.85 0.41
15.1 7.1
3.1 2.2
3.1 0.9
6.2 2.2
14.6 8.0
10.6 11.9
46.9 67.7
56.2 (19.7) 61.6 (20.1)
Sexual activity
Mild problems Not capable
0.82c 0.75c
4.9 2.2
5.3 1.3
9.7 3.1
24.8 7.5
28.3 18.6
12.8 30.1
14.2 37.2
62.2 (13.3) 70.6 (12.5)
Fertility
Mild problems Infertile
n.a. n.a.
8.8 6.6
43.4 12.4
28.8 44.7
8.8 18.6
1.8 4.0
0.9 3.5
7.5 10.2
45.0 (9.3) 51.3 (10.8)
a Average age at which these health problems are considered acceptable, as indicated by those respondents who did not indicate ‘never’. b These figures are based on the tariff in Dolan (1997) calculated as health problems in the mentioned domain and fully healthy in all other domains (e.g., 31111). c These are estimates based on a study of quality of life losses due to erectile dysfunction (see, Stolk, Busschbach, Caffa, Meuleman, & Rutten, 2000).
Problems in the health domain ‘pain/discomfort’ are associated with the largest losses in quality of life, but they are not associated with the lowest levels of acceptability. The highest level of acceptability of impaired health is found for the domain ‘‘mobility’’. Only 11.5% of the respondents considers some problems with walking about to be unacceptable at any age. Looking at Table 2, it is therefore important to note that less than perfect health states, especially mild health problems, are considered acceptable beyond some age by most respondents, even for the more important health domains captured in the EQ-5D. As may be expected, severe reductions in health (EQ-5D score 3) were less often considered acceptable in all five health domains and at any age. Extreme anxiety and depression were again most often considered fully unacceptable, while the corresponding QALY score again cannot explain this exceptional position. Severe problems with usual activities were most often considered acceptable beyond some age. This is also clear from Fig. 1. At 30 years of age the level of acceptance of health problems in any domain of health is low (all scores are close to 1 on the EQ-5D, meaning ‘‘no problems’’), but this increases rapidly after the age of 70. As the respondents indicated
that these health problems are acceptable per domain, it is unlikely that respondents would find it acceptable that a single person is inflicted with all the domain-specific acceptable health problems at the same time. Nonetheless, the line ‘‘acceptable value QoL’’ in Fig. 1 was deducted by calculating for each age group the quality of life score based on acceptable health problems for all five domains of the EQ-5D. What this line indicates, however, is that after the age of 70 people who are confronted with more than one ‘‘acceptable’’ health problem soon end-up with very low quality of life, both in absolute terms as when compared to actual agespecific reference values (see line ‘‘reference value QoL’’ in Fig. 1; based on figures from Kind et al., 1999). The acceptability of combinations of health losses in different domains could be investigated further. The final column of Table 2 denotes the average age at which health problems are considered acceptable. In calculating this average age, those respondents who find the specific health problem unacceptable at any age were obviously excluded, which introduces an inevitable bias. For example, although the average age in the final column shows just little difference in the average age at which mild problems with self-care are acceptable
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2
0.2 0.0
Quality of life (EQ-5D)
Level of acceptability health state
3
243
Mobility Self care Daily activities Pain/discomfort Anxiety/depression Sexual activity Fertility Acceptable value QoL Reference value QoL
−0.2 −0.4
1 30
40
50
60
70
80
Age
Fig. 1. Average acceptability of domain-specific health states (level of acceptability: 1=no problems; 2=mild problems; 3=severe problems) at different ages, deducted acceptable quality of life values, and age-specific quality of life reference values ðn ¼ 226Þ: 1.0
Quality of life (EQ-5D)
compared to the age at which severe problems with selfcare are acceptable (72.0 years vs. 73.9 years) this number does not reflect that 43.8% of the respondents find the latter always unacceptable, while the former is considered unacceptable by ‘only’ 15.5%. Likewise, severe anxiousness or depression is considered acceptable at any point in life by only a minority of the respondents (i.e., 32.3%). Still, this group indicates a relatively low age at which they consider these problems to be acceptable (i.e., 61.6 years) as compared to for example severe problems with mobility (i.e., 73.6) or usual activities (i.e., 70.2). It also needs noting that people could not indicate ages below 30, which also leads to some bias in the averages. The latter problem may be less disturbing, given the normally low numbers of people who consider health problems acceptable ‘even’ at the age of 30. (In addition, as can be seen from Fig. 2, there appears to be a relation between acceptability of a health state and its EQ-5D reference score (Dolan, 1997). Linear regression demonstrated that the quality of life scores predict 70% of the variance in the percentage respondents indicating ‘never’ and the relationship between the two is statistically significant (po0.001).) Next, we investigated whether problems with (female) fertility and (male) sexual activity are considered acceptable in more advanced stages of life. The reimbursements of treatments such as sildenafil and IVF have been fiercely debated and an often heard argument is that these problems are a consequence of the normal process of ageing. Therefore, we expected that these health problems would be considered acceptable more often at younger age than those in the five health domains of the EQ-5D. As can be seen from Table 2 (and Fig. 1), female fertility problems are considered unacceptable at any age by only a small portion of the respondents. Probably, this has to do with the fact that at very advanced stages of life (e.g., 70 and beyond) only few consider it to be desirable for a woman
0.8 0.6 0.4 0.2 0.0 0
20
40
60
80
100
% 'never acceptable'
Fig. 2. Quality of life score of a health state and percentage of respondents indicating that the health state is ‘never acceptable’ (n ¼ 12; i.e., based on two levels of impairment on six health domains and 226 respondents, see also Table 2).
to give birth or become pregnant. For sexual activity for men these percentages were somewhat higher, indicating the fact that being able to engage in sexual activity is often considered an important capability even at an older age, but these scores are relatively low in comparison to the percentages for the five health domains of the EQ-5D. Only mild problems with mobility and with usual activities scored lower than having some problems with sexual activity. Finally, we analysed whether personal characteristics of respondents are of influence on statements that the presented health problems are never acceptable. For all the health domains of the EQ-5D except for ‘‘pain/ discomfort’’, respondents indicating that severe problems (score 3) are never acceptable on average are 3–4 years older (po0.05 for all four cases). Male respondents significantly more often consider severe problems with mobility, performing usual activities or experiencing extreme anxiety or depression to be unacceptable at any age (po0.05 for all four cases). Why this is the case could be further investigated. For severe problems with self-care or pain/discomfort no significant difference was found between males and females. Smoking habits (see Table 1), self-assessed health status (using the EQ-VAS)
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and income did not differ significantly between groups for any of the health domains of the EQ-5D. To our surprise, no differences in gender or age were found between groups indicating that being unable to be sexually active or being infertile was unacceptable at any given age.
Conclusion and discussion In this paper, we have explored the acceptability of less than perfect health states at different ages. It needs to be stressed that our sample, with an over-representation of middle-aged respondents, may have biased our empirical results. Since our results indicate that the option ‘never acceptable’ was more often chosen by relatively old respondents, such a bias could be expected to be likely. Still, our results clearly demonstrate that people often find mild health problems in most health domains acceptable, and sometimes even severe health problems. Using a larger sample or even a more representative sample would probably not have changed this main conclusion. The degree of acceptability of health problems increases substantially with age (see Table 2 and Fig. 1) and varies per health domain. We believe that these findings can prove to be important in the context of resource allocation decisions based on the results of economic evaluations. The fact that some health states may be considered acceptable for some individuals but not for others, may imply that health gains in the former may be valued less from a societal perspective than those in the latter. Indeed, this may have consequences for how to value different health states (e.g., giving an indication of the age or life stage at which some health state is experienced) as well as for how to calculate QALY gains from a certain intervention. Though we have not investigated this, it would be a logical extension of the results presented here. Future research could therefore be aimed at establishing the relative preference of the general public for health gains in the ‘acceptable zone’ and the ‘unacceptable zone’ in order to derive societal preference orderings over different health gains. In that sense, the current QALY model could be altered to take these issues into account more directly. The basis of distributing health care over different patient groups also deserves attention in this respect. Where economic evaluation seems firmly rooted in the utilitarian approach, some have argued that an approach based on need or right to care could be considered a better approach, theoretically or empirically (e.g., Rawls, 1971; Sen, 1982; Daniels, 1985; Daniels, 1988; Hurley, 1998; Brouwer & Koopmanschap, 2000; Anand & Wailoo, 2000). The basis on which to distribute health care also determines the
usefulness of results of empirical investigations in distributive preferences. A noteworthy feature of our empirical study is that in assessing the acceptability of less than perfect health states, we referred to health profiles implicitly reflecting EQ-5D health profiles. However, the only profiles used were those in which health problems occur in only one domain while no problems exist in all other domains. To put it in terms of the EQ-5D nomenclature: we only used health profiles such as 21111, 31111, 12111, etc. Although one may argue that not all of these health profiles are very realistic (a feeling that may have been shared by the respondents by the way), we felt it to be important in this first exploration of the acceptability concept to vary only one health domain per question in order to be better able to interpret the provided answers. A result of using health profiles with only one affected domain is that the acceptance figures we presented are independent elicitations per health domain. Respondents most probably will not consider it acceptable that a single person suffers from all acceptable domainspecific health problems at the same time (as we have illustrated in Fig. 1, this would already lead to ‘acceptable’ quality of life scores close to 0 for people aged 70). Therefore, though health domain specific less than perfect health states appear acceptable, such reference points should not be regarded independent from the person’s (perhaps also acceptable) health problems in other health domains. Future research may therefore use health profiles in which several health domains are affected in order to investigate the acceptability of more realistic, imperfect health profiles. As an aside, it may also be interesting to see whether respondents in health state assessments, when having to indicate having no, mild or severe problems in some health domain to some extent reflect in their answers a normal level of functioning. In other words, whether an older person would indicate having no problems with mobility while a younger person with a similar functioning on the domain mobility would indicate at least to have mild problems. If this occurs, this may influence the objective assessment of health states, as well as subsequent valuation. The acceptability results for the health dimension ‘pain/discomfort’ were a bit surprising, also when comparing them to the EQ-5D references scores for this dimension, in the sense that lower levels of acceptability were expected for this category. It would be interesting to see whether this result will also hold in other investigations of this kind and whether the somewhat vague term ‘discomfort’ (in the Dutch version perhaps even more vaguely labelled ‘other complaints’) disturbs these findings. Some important issues, like (peoples’ perceptions of) treatment possibilities and the origin of certain health problems, may have influenced these results and could
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also be investigated further. First, the acceptability of less than perfect health states may be influenced by whether these problems can be cured. Indeed, if acceptability is a result of (societal) coping with inevitable deterioration of health, this may mean that health problems that cannot be cured will have to be coped with and therefore may sooner be considered acceptable. For example, in case mobility problems of elderly could be treated just as well as those of the young, the acceptability of reduced mobility in elderly may have been lower. This may also (partly) explain why anxiety and depression are less often considered acceptable. We did not collect qualitative data on the rationales behind people’s answers, which could have provided valuable information in this respect, also in explaining differences between answers from males and females for instance. Second, acceptability of health states may relate to the origin of health problems. Similar health problems may be considered more acceptable for people that may be held (partly) responsible for those problems themselves (e.g., health losses as a consequence of an unhealthy eating habits or smoking). Third, the relation between the acceptability of health states and ‘lifestyle use of health care’ is important. Health enhancement beyond what is considered normal or acceptable can be interpreted as lifestyle use of health care (Mitrany, 2001), although pleasure seeking in contrast to pain avoiding (Stolk et al., 2002a) may be considered a more appropriate name. Aims of policymakers as expressed in several recent studies (Titlow,
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Randel, Clancy, & Emanuel, 2000; Beecham, 1999) could conflict with the views of the general population on distributive justice. Rationing on basis of such lifestyle arguments may therefore lead to opposition in the general public, when not properly explained and justified. An explanation in which people are introduced into the realm of health policymakers may indeed change their views on priorities in health care (Cookson & Dolan, 1999; Dolan, Cookson, & Ferguson, 1999). Concluding, Sen has paved the way for interpreting health as a capability, which allows us to live life the way we want to. That this capability is subject to erosion over time is painfully evident in society. This seems to have shifted our (societal) reference point for health capabilities in advanced stages of life to points below perfect health, with the erosion of some health capabilities considered to be more acceptable than that of others. Given scarce health care resources, knowledge of these age and domain-specific reference points for health may be important in allocating health care resources in ways that better reflect societal preferences. That makes Sense!
Acknowledgements We are grateful to Paul Anand, Stephen Brch, Paul Dolan and two anonymous reviewers for useful comments on an earlier draft of this paper. The usual disclaimer applies.
Appendix A. Examples from the survey A.1. Acceptability These questions were posed as follows for all five EQ-5D dimensions. *
Can you indicate beyond what age you consider the specified level of problems with ‘mobility’ to be acceptable? (Please indicate below the relevant age categories) Age category Never Beyond Beyond Beyond Beyond Beyond Beyond the age of the age of the age of the age of the age of the age of 80 70 60 50 40 30
Some problems with walking Confined to bed For sexual activity and fertility the questions were, respectively. *
*
Can you indicate beyond what age you consider the specified level of problems with ‘sexual activity’ to be acceptable? (levels: some problems with sexual activity, not capable of sexual activity). Can you indicate beyond what age you consider the specified level of infertility in women to be acceptable? (levels: some fertility problems, completely infertile).
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Acceptability of less than perfect health states Werner B.F. Brouwer*, N. Job A. van Exel, Elly A. Stolk Institute for Medical Technology Assessment, Erasmus University Rotterdam, PO Box 1738, 3000 DR Rotterdam, The Netherlands Available online 19 June 2004
Abstract Health normally deteriorates beyond a certain age. This means, in Amartya Sen’s terms, that one’s health capabilities decline beyond a certain age, making it more difficult to achieve functionings such as mobility or sexual activity. In this paper, we investigate whether this normal reduction in quality of life also induces less than perfect health states to be considered acceptable at advanced stages of life. In other words, we investigate whether it is considered acceptable that health capabilities decline over time. In this study, we use domain-specific descriptions of health (mostly following the EQ-5D domains) in order to investigate whether the acceptability of less than perfect health states is similar for all types of health losses. Besides a theoretical consideration of this issue, we present some empirical evidence based on the answers of 226 respondents to a web-based survey. The results show that often individuals do indeed consider less than perfect health states acceptable, especially at more advanced stages of life. Mild health problems are more often considered acceptable than severe health problems. The acceptability of health states is related to the quality of life score of these states, i.e., worse states are considered less acceptable. This may have implications for the allocation of scarce health care resources. r 2004 Published by Elsevier Ltd. Keywords: Health states; Acceptability; Right to health care; Rationing
Introduction It is quite normal that ones health deteriorates beyond a certain age. This means—in Sen’s terms—that one’s health capabilities decline beyond a certain age, making it more difficult to achieve functionings such as self-care or mobility. Indeed, a 90-year old, who still manages to walk to and from a nearby grocery, will encounter admiration for this accomplishment while it is considered a normal activity for most 30-year olds. Seemingly, it is considered normal to be able to walk about freely up till a certain age, but after that age the same level of mobility is considered to be an indication of above average health. Apparently, people hold age-specific reference points for mobility. If reference points for what good health entails shift with age, this raises the *Corresponding author. Tel.: +31-10-408-2507; fax: +3110-408-9094. E-mail address: [email protected] (W.B.F. Brouwer). 0277-9536/$ - see front matter r 2004 Published by Elsevier Ltd. doi:10.1016/j.socscimed.2004.04.032
interesting question for economic evaluations and priority setting whether less than perfect health states might be considered acceptable at advanced stages of life. In other words, whether it is considered acceptable that health capabilities decline over time. The fact that the decline of health is related to age, makes this particularly interesting, since the decline is therefore universal and not more or less exceptional as for the health decline related to other factors (such as gender, unhealthy life styles, socio-economic health differences, etc.). This may strengthen the acceptability of reduced health capabilities, as it can be seen as a normal part of the ageing process we are all subject to. The assertion that health declines beyond a certain age is certainly not new, both as a fact of life (e.g., Kind, Hardman, & Macran, 1999) and as a methodological problem in the calculation of health gains and losses (e.g., Fryback & Lawrence, 1997; Bleichrodt, Herrero, & Pinto, 2002). Nevertheless, as far as we know it has never been investigated whether such reductions in
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health in advanced stages of life are considered acceptable. Are there less than perfect health states, which are considered acceptable for older persons, yet unacceptable for younger ones? Do we feel that the health capabilities of the young should be more elaborate than those of the old? And can we identify an age after which having some problems with functionings such as self-care or mobility is considered acceptable? These issues clearly relate to distributional preferences for health care in society and whether normal deterioration of health plays a role in these preferences. These distributive preferences and how to assess them are a much discussed topic in the recent health economic literature (Williams & Cookson, 2000; Anand & Wailoo, 2000; Dolan & Olsen, 2002). It is well known that distributional preferences for treating the young over the old exist in society (e.g., Williams, 1997). We assert that this may have to do with the fact that some states are considered more acceptable in the old than in the young. If so, this may have implications for the way in which health state valuations should be elicited and how to value health changes at different stages in life. In this paper, we therefore focus on acceptability of less than perfect health states. Our main question is whether less than perfect health states can be considered acceptable, and whether this acceptability is age related. If less than perfect health states are considered acceptable in some instances, and more so in the elderly than in the young, this may have implications for the allocation of scarce health care resources. The structure of the paper is as follows. The following section provides some theoretical background concerning the concept of reference points for health within the context of health care rationing. The penultimate section will present the results of a web-based survey that was undertaken to empirically test the acceptability of less than perfect health states at different ages. The ultimate section concludes.
Acceptability of health states at different ages Good health means different things at different ages. As discussed in the introduction, people implicitly seem to refer to certain reference points for health that are age dependent. (Deviations from some reference point as starting point for assessing the goodness of a certain state were introduced by Kahneman and Tversky (1979) as core of their prospect theory.) Probably, this has much to do with the fact that people expect and accept that normally health deteriorates beyond a certain age, although this may be truer for some health domains than for others (e.g., mobility may decline more obviously than mental health and being in pain may be considered to be equal at all ages). On a QALY scale,
this implies that beyond a certain age, people move away from perfect health (Kind et al., 1999). Possible (domain specific) reference points for health lead to some interesting issues and problems, some of which have been discussed in the literature, but others have not received much attention so far. Fryback and Lawrence (1997) point out that the use of perfect health as an anchor point misrepresents the true health gains in economic evaluations of health care interventions, especially interventions aimed at elderly. This is the case because older patients will normally not return to perfect health after being cured from some ailment. Therefore, over-estimations of health gains occur and Fryback and Lawrence propose as a solution to use age-specific reference scores for health to calculate health gain. This of course also raises the question whether people strive for a perfect or rather for an acceptable (or normal) health state. Bleichrodt et al. (2002) point out that if the latter is the case, this implies that health state valuation may be a relative rather than an absolute process. The valuation of different health states should then be dependent on expectations and abilities of individuals. Nord, Pinto, Richardson, Menzel, and Ubel (1999) also refer to this ‘potential to benefit’. As Bleichrodt et al. (2002) put it: The problemyis that the set of attainable health states differs across people. For instance, the set of attainable health states of a permanently paralysed individual is different from the set of attainable health states of a healthy individual, which can lead to different valuations for a similar change in health. Bleichrodt et al. (2002) propose a method of correcting for such differences, making health state valuations comparable across different people. The phenomenon of changing sets of attainable health states and shifting reference points for health is intriguingly present in the process of ageing. Although there may be reference points for health for specific patient groups (e.g., those born blind), all of us (assuming an average life span) will experience deterioration of health beyond a certain age. As time passes, we descend the QALY ladder, and we seem to cope with it. We adapt to our new, reduced health states as time goes by and compare ourselves to relevant others to see how we should evaluate our health (e.g., Bleichrodt et al., 2002). This group of relevant others will most likely consist of comparable individuals of similar age as ourselves. This implies that the 90-year old with only mild problems with mobility and self-care may consider himself to be ‘lucky’ within his health reference group, while a 30-year old in the same health condition may consider himself ‘unlucky’ in his reference group. In Sen’s terms: at different ages a different set of health capabilities are considered to be the reference point. At more advanced stages of life, we do not expect to have the health capabilities of a 30-year old or to enjoy the
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same functionings related to health capabilities. Moreover, we all know that this deterioration of health capabilities will occur, and therefore, as a society we have some expectation about what is normal health in different age groups. Indeed, the fact that our reference point for health is not equal for young and old indicates a process of collective ‘anticipative coping’. Therefore, the deterioration and coping on an individual level may translate in reference points for normal health at different ages at the societal level. An important question here is whether the fact that health normally reduces with age (beyond a certain point anyway) also implies that we find it more acceptable that elderly are in worse health states than the young. We may feel it is (privately and socially) acceptable that a 90-year old can no longer walk for more than 3 miles, while we do consider this health state unacceptable for a 30-year old, because in the latter case the health level falls short of our reference point for health at the age of 30. Furthermore, the acceptability of less than perfect health states may depend on the specific health capabilities—quality of life dimensions—lost. For instance, reduced mobility may be considered a normal part of ageing, yet feeling depressed or having pain may not. It may therefore be less useful to look at QALY levels for the determination of acceptable health states and more useful to look at which types of health losses are considered acceptable at different ages. Some health capabilities may be considered ‘ageless’ (e.g., being pain free) while others may be more age-dependent (e.g., being mobile). It is also important here, following Sen (1985) (see also Culyer, 1990), to distinguish between capabilities, resources and functionings. The functioning of walking about depends on one’s health capabilities in the mobility dimension—e.g., being able to walk about. What we are concerned with here is not whether we would wish to restore this functioning, but the health capability of being able to walk yourself. The functioning could also be restored by providing an elderly person with an additional (health care) resource such as some walking aid, but we are especially concerned with restoring the intrinsic health capabilities. If it is true that a similar level of health is perceived differently for people of different ages or with different reference groups, we might wish to explore which reduction in health capabilities is still considered acceptable at different ages. Such exploration may especially be important in the context of health care rationing. If there are age-specific acceptability-levels for less than perfect health states, we may be willing to pay more for health gains that occur in people well below this level than for similar gains in people just below or even at or beyond this level (Stolk, Brouwer, & Busschbach, 2002a; Stolk, Poley, Brouwer, & Busschbach, 2002b). It has been argued on various occasions that the necessity or priority of treatment may be
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dependent on the initial level of quality of life (e.g., Nord et al., 1999; Dolan & Olsen, 2002; Stolk et al., 2002a). Indeed, it seems that necessity plays an important role in practical decision-making (Stolk et al., 2002b). The lower people initially are on the QALY scale, the higher the perceived necessity of treatment is. However, such an argument would suggest that more funds should be allocated to the elderly instead of the young, since the elderly normally are in worse health states than the young. Apart from considerations of length of enjoying the effects of an intervention (the young benefit longer than the old normally do) and other normative considerations such as the fair innings argument1 (e.g., Williams, 1997)— which by the way does not discriminate on a health domain level—this ignores the fact that worse health states are perhaps considered normal for the old, but not for the young. If so, the difference between the age and domain-specific reference point for health and actual health should perhaps determine the necessity of treatment. We therefore hypothesise that unacceptable health states may be considered a (stronger) indication for medical treatment than less than perfect yet acceptable health states (with the same priority)—that may be seen as part of the normal ageing process.2 This closely relates to the proposition of Fryback and Lawrence (1997) to use average age-specific QALY scores as anchor points for economic evaluation. The idea here, however, is more normative than pragmatic: Society must strive to bring individuals ‘back to normal’ in terms of domain-specific acceptable health states rather than back to perfect health. Concepts like good health and necessity of care therewith become relative rather than absolute concepts. The consequence of this line of reasoning, to paraphrase Weinstein (1988), is that a QALY is not a QALY is not a QALY. At this moment, there already are some powerful concepts, such as fair innings, which argue that QALYs are valued differently when won in different people. The concept of acceptable health states—if it indeed is demonstrated to exist—may add to the notion that it matters to whom QALY gains accrue. In the remainder of this paper, we will therefore investigate whether less than perfect health states are considered acceptable (at certain ages) and whether this acceptability is age dependent and varies by health domain. If so, this may imply that health gains in people in unacceptable health states are valued higher than 1
The fair innings argument by the way will often also work in favour of the more severe patients—though not always. 2 In fact, in the Netherlands, such a prioritisation rule has been put forward in 1989, yet operationalisation proved difficult (Commissie Keuzen in de Zorg, 1991). Currently, a QALY-based operationalisation of the concept of necessity is being developed and tested (Stolk et al., 2002b).
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those gained in people in (more) acceptable states and that the value of some health gains may be overestimated in economic appraisal. Whether these differences in valuation also occur is not investigated here. This is seen as a logical next step if (some) less than perfect health states indeed are considered acceptable at some ages.
Putting it to the test Survey In order to test whether the acceptability of less than perfect health states indeed exists, we conducted a webbased survey. Next to some general information such as age, gender and health state, we asked respondents about the acceptability of different health states at different ages. Our meaning of the term ‘acceptability’ was made clear by providing an example in which it was explained that we were looking at acceptability in terms of coping with a less than perfect health state and accepting it as ‘normal deterioration’. For the elicitation of acceptability of less than perfect health states at different ages we used health state descriptions from the EQ-5D (The EuroQol Group, 1999; see also www.euroqol.org). The EQ-5D distinguishes between five health domains, i.e., ‘‘mobility’’, ‘‘self-care’’, ‘‘usual activities’’, ‘‘pain/discomfort’’, and ‘‘anxiety/depression’’, and three health state levels for each health domain corresponding to ‘‘no problems’’, ‘‘mild problems’’ and ‘‘severe problems’’. By using health domains rather than an overall QALY score, we can investigate whether acceptability of less than perfect health states is similar for all types of health losses. This may be important, since deterioration in some health domains may be considered less related to age and therefore not to vary (as much) with age than others. We instructed the respondents to focus on the presented health problems, explicitly instructing them to assume no problems in all other health domains. The questions referring to health domains therefore implicitly reflected health states in the EQ-5D nomenclature of for example 21111 and 11311. Although one may argue that not all of these health profiles are very realistic we felt it to be important to vary only one health domain per question in order to be better able to interpret the provided answers—e.g., whether one particular type of health problem is more acceptable at an older age than at a younger age. One may for instance argue that being depressed is equally undesirable for people of all ages, but that having difficulties walking about is more acceptable for elderly. By doing so, acceptability of health states is implicitly related to reference points for normal (or acceptable) health at different ages.
Furthermore, we added two additional health domains, i.e., ‘‘sexual activity’’ and ‘‘female fertility’’. These health domains were added because the age specificity of acceptable reductions in these health domains was expected to be relatively large. Moreover, these health domains are typically controversial, especially in terms of reimbursement of treatments related to health losses in these domains, e.g., sildenafil (ViagraTM) and IVF (see Appendix A for more details on the questionnaire). In the survey, we asked respondents to indicate from what age onward they considered mild and severe problems in each of the seven health domains to be acceptable by ticking an age group in the range from 30 to 80 years and older (in 10 years intervals). Alternatively, respondents could indicate they never found a certain health state acceptable, regardless of age. The questionnaire is summarised in Appendix A. The respondents A total of 400 respondents, a random selection of individuals registered with a web-survey organisation, were approached to participate in our study by means of email. A total of 226 respondents completed the webbased survey (response rate of 56.5%). Table 1 presents some characteristics of our sample. The study sample appears to be reasonably representative for the Dutch population. The sample did not significantly differ from the general population in regard to the gender distribution, educational level, marital status, income and usual activities, or family composition. The distribution across age groups, however, differed statistically significant from the distribution in the general population (po0.001). Perhaps not surprising for a web-based survey, people between 21 and 40 years of age were over-represented (they made out 66% of our sample instead of the expected 49%), while people between 51 and 70 years of age were underrepresented (8.9% instead of the expected 26.5%). The mean age of the respondents was 36.9 years (range 18– 65). Also the health state of our sample was representative for the Dutch population (Stolk & Busschbach, submitted). The results Table 2 presents the elicitations of the 226 respondents regarding the acceptability of certain levels of impaired functioning at different ages (see also Fig. 1). Our main hypotheses were that (i) less than perfect health states would be considered acceptable relatively often in advanced stages of life, (ii) the acceptability of less than perfect health states would be health domain specific and (iii) (therefore) dependent on the quality of life score of those states.
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Table 1 Study sample characteristics (n ¼ 226) Personal characteristics Age (mean; range) Gender (% female) Nationality (% Dutch)
36.9 54.9 97.8
Education level Primary or secondary school (%) Lower or middle vocational Higher vocational or university
19.0 46.0 35.0
Daily activity Full-time employed (%) Part-time employed Education/school Other
47.3 20.4 18.1 14.1
Income level Up to 20,000 euro (gross, per year) 20,000–25,000 euro 25,000–40,000 euro 40,000 euro or more Missing
12.8 15.0 31.0 10.2 30.9
Marital status Married/living together Single/divorced/widow Other
61.1 29.2 9.6
Health characteristics EQ-VAS (mean; 95% CI) EQ-5D (mean; 95% CI)
73.3 0.85
Health lifestyle ‘‘I live healthier than most other people’’ (%) ‘‘I live as healthy as most other people’’ ‘‘I live less healthy than most other people’’
8.0 78.3 13.7
Smoking (% five cigarettes a day or more)
39.4
At first glance, respondents indicated that almost all less than perfect health states are considered acceptable beyond a certain age, and that the level of acceptance of less than perfect health states increases with age. When looking more specifically to the different health domains, Table 2 shows that a large majority of the respondents considers moderate levels of impairment (EQ-5D score 2) acceptable on all health domains except for ‘‘anxiety/depression’’. Almost 47% of the respondents indicates never to find moderate anxiety or depression acceptable. Interestingly, this type of health loss is also considered to be acceptable at early stages of life most frequently (i.e., 15.1% of the respondents finds moderate anxiety or depression acceptable at age 30). This may indicate that respondents consider these health problems to be relatively normal at a younger age. The fact that relatively many respondents indicate to
18–65
70.4–76.3 0.82–0.87
consider this type of problem acceptable at the age of 30, may also reflect to some extent that some respondents find this acceptable at any given age (since 30 was the first category they could choose). For all other health domains, including the category ‘‘pain/discomfort’’, the percentage of respondents indicating to never consider moderate health problems acceptable, does not rise above 16.4%. Anxiety and depression appear to be considered as either too severe conditions to be acceptable or not as a normal part of ageing and therefore an unacceptable health state even at advanced stages of life. This can, however, not be explained by the corresponding EQ-5D reference score (Dolan, 1997) for this health state (see Table 2), which is comparable to that of having mild problems with mobility or undertaking usual activities. In that sense, the results for pain/discomfort are also surprising.
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Table 2 Acceptability of less than perfect health states beyond a certain age in percentage of respondents, median in bold (n ¼ 226) Health domain
Domain-specific health state
Acceptability of domain-specific health state at age ofy (%)
Acceptable from agea (s.d.)
Description
QALY scoreb
30 yr
40 yr
50 yr
60 yr
70 yr
80 yr
Never
Mobility
Mild problems Confined to bed
0.85 0.34
4.9 2.7
0.9 —
3.5 —
17.7 3.1
39.4 11.5
22.1 31.0
11.5 51.8
67.2 (12.3) 73.6 (12.1)
Self-care
Mild problems Severe problems
0.82 0.44
3.5 3.1
0.9 0.9
1.8 0.4
5.3 2.2
30.5 9.3
42.5 40.3
15.5 43.8
72.0 (11.8) 73.9 (12.9)
Usual activities
Mild problems Severe problems
0.88 0.56
6.6 5.3
1.3 0.4
4.4 0.9
20.8 4.9
33.6 15.5
21.2 30.5
11.9 42.5
65.6 (13.5) 70.2 (15.0)
Pain/discomfort
Moderate Extreme
0.80 0.26
11.9 5.3
5.3 1.3
10.2 2.7
15.9 5.8
24.3 11.1
15.9 17.7
16.4 56.2
59.9 (16.5) 65.8 (16.8)
Anxious/depressed Moderate Extreme
0.85 0.41
15.1 7.1
3.1 2.2
3.1 0.9
6.2 2.2
14.6 8.0
10.6 11.9
46.9 67.7
56.2 (19.7) 61.6 (20.1)
Sexual activity
Mild problems Not capable
0.82c 0.75c
4.9 2.2
5.3 1.3
9.7 3.1
24.8 7.5
28.3 18.6
12.8 30.1
14.2 37.2
62.2 (13.3) 70.6 (12.5)
Fertility
Mild problems Infertile
n.a. n.a.
8.8 6.6
43.4 12.4
28.8 44.7
8.8 18.6
1.8 4.0
0.9 3.5
7.5 10.2
45.0 (9.3) 51.3 (10.8)
a Average age at which these health problems are considered acceptable, as indicated by those respondents who did not indicate ‘never’. b These figures are based on the tariff in Dolan (1997) calculated as health problems in the mentioned domain and fully healthy in all other domains (e.g., 31111). c These are estimates based on a study of quality of life losses due to erectile dysfunction (see, Stolk, Busschbach, Caffa, Meuleman, & Rutten, 2000).
Problems in the health domain ‘pain/discomfort’ are associated with the largest losses in quality of life, but they are not associated with the lowest levels of acceptability. The highest level of acceptability of impaired health is found for the domain ‘‘mobility’’. Only 11.5% of the respondents considers some problems with walking about to be unacceptable at any age. Looking at Table 2, it is therefore important to note that less than perfect health states, especially mild health problems, are considered acceptable beyond some age by most respondents, even for the more important health domains captured in the EQ-5D. As may be expected, severe reductions in health (EQ-5D score 3) were less often considered acceptable in all five health domains and at any age. Extreme anxiety and depression were again most often considered fully unacceptable, while the corresponding QALY score again cannot explain this exceptional position. Severe problems with usual activities were most often considered acceptable beyond some age. This is also clear from Fig. 1. At 30 years of age the level of acceptance of health problems in any domain of health is low (all scores are close to 1 on the EQ-5D, meaning ‘‘no problems’’), but this increases rapidly after the age of 70. As the respondents indicated
that these health problems are acceptable per domain, it is unlikely that respondents would find it acceptable that a single person is inflicted with all the domain-specific acceptable health problems at the same time. Nonetheless, the line ‘‘acceptable value QoL’’ in Fig. 1 was deducted by calculating for each age group the quality of life score based on acceptable health problems for all five domains of the EQ-5D. What this line indicates, however, is that after the age of 70 people who are confronted with more than one ‘‘acceptable’’ health problem soon end-up with very low quality of life, both in absolute terms as when compared to actual agespecific reference values (see line ‘‘reference value QoL’’ in Fig. 1; based on figures from Kind et al., 1999). The acceptability of combinations of health losses in different domains could be investigated further. The final column of Table 2 denotes the average age at which health problems are considered acceptable. In calculating this average age, those respondents who find the specific health problem unacceptable at any age were obviously excluded, which introduces an inevitable bias. For example, although the average age in the final column shows just little difference in the average age at which mild problems with self-care are acceptable
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2
0.2 0.0
Quality of life (EQ-5D)
Level of acceptability health state
3
243
Mobility Self care Daily activities Pain/discomfort Anxiety/depression Sexual activity Fertility Acceptable value QoL Reference value QoL
−0.2 −0.4
1 30
40
50
60
70
80
Age
Fig. 1. Average acceptability of domain-specific health states (level of acceptability: 1=no problems; 2=mild problems; 3=severe problems) at different ages, deducted acceptable quality of life values, and age-specific quality of life reference values ðn ¼ 226Þ: 1.0
Quality of life (EQ-5D)
compared to the age at which severe problems with selfcare are acceptable (72.0 years vs. 73.9 years) this number does not reflect that 43.8% of the respondents find the latter always unacceptable, while the former is considered unacceptable by ‘only’ 15.5%. Likewise, severe anxiousness or depression is considered acceptable at any point in life by only a minority of the respondents (i.e., 32.3%). Still, this group indicates a relatively low age at which they consider these problems to be acceptable (i.e., 61.6 years) as compared to for example severe problems with mobility (i.e., 73.6) or usual activities (i.e., 70.2). It also needs noting that people could not indicate ages below 30, which also leads to some bias in the averages. The latter problem may be less disturbing, given the normally low numbers of people who consider health problems acceptable ‘even’ at the age of 30. (In addition, as can be seen from Fig. 2, there appears to be a relation between acceptability of a health state and its EQ-5D reference score (Dolan, 1997). Linear regression demonstrated that the quality of life scores predict 70% of the variance in the percentage respondents indicating ‘never’ and the relationship between the two is statistically significant (po0.001).) Next, we investigated whether problems with (female) fertility and (male) sexual activity are considered acceptable in more advanced stages of life. The reimbursements of treatments such as sildenafil and IVF have been fiercely debated and an often heard argument is that these problems are a consequence of the normal process of ageing. Therefore, we expected that these health problems would be considered acceptable more often at younger age than those in the five health domains of the EQ-5D. As can be seen from Table 2 (and Fig. 1), female fertility problems are considered unacceptable at any age by only a small portion of the respondents. Probably, this has to do with the fact that at very advanced stages of life (e.g., 70 and beyond) only few consider it to be desirable for a woman
0.8 0.6 0.4 0.2 0.0 0
20
40
60
80
100
% 'never acceptable'
Fig. 2. Quality of life score of a health state and percentage of respondents indicating that the health state is ‘never acceptable’ (n ¼ 12; i.e., based on two levels of impairment on six health domains and 226 respondents, see also Table 2).
to give birth or become pregnant. For sexual activity for men these percentages were somewhat higher, indicating the fact that being able to engage in sexual activity is often considered an important capability even at an older age, but these scores are relatively low in comparison to the percentages for the five health domains of the EQ-5D. Only mild problems with mobility and with usual activities scored lower than having some problems with sexual activity. Finally, we analysed whether personal characteristics of respondents are of influence on statements that the presented health problems are never acceptable. For all the health domains of the EQ-5D except for ‘‘pain/ discomfort’’, respondents indicating that severe problems (score 3) are never acceptable on average are 3–4 years older (po0.05 for all four cases). Male respondents significantly more often consider severe problems with mobility, performing usual activities or experiencing extreme anxiety or depression to be unacceptable at any age (po0.05 for all four cases). Why this is the case could be further investigated. For severe problems with self-care or pain/discomfort no significant difference was found between males and females. Smoking habits (see Table 1), self-assessed health status (using the EQ-VAS)
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and income did not differ significantly between groups for any of the health domains of the EQ-5D. To our surprise, no differences in gender or age were found between groups indicating that being unable to be sexually active or being infertile was unacceptable at any given age.
Conclusion and discussion In this paper, we have explored the acceptability of less than perfect health states at different ages. It needs to be stressed that our sample, with an over-representation of middle-aged respondents, may have biased our empirical results. Since our results indicate that the option ‘never acceptable’ was more often chosen by relatively old respondents, such a bias could be expected to be likely. Still, our results clearly demonstrate that people often find mild health problems in most health domains acceptable, and sometimes even severe health problems. Using a larger sample or even a more representative sample would probably not have changed this main conclusion. The degree of acceptability of health problems increases substantially with age (see Table 2 and Fig. 1) and varies per health domain. We believe that these findings can prove to be important in the context of resource allocation decisions based on the results of economic evaluations. The fact that some health states may be considered acceptable for some individuals but not for others, may imply that health gains in the former may be valued less from a societal perspective than those in the latter. Indeed, this may have consequences for how to value different health states (e.g., giving an indication of the age or life stage at which some health state is experienced) as well as for how to calculate QALY gains from a certain intervention. Though we have not investigated this, it would be a logical extension of the results presented here. Future research could therefore be aimed at establishing the relative preference of the general public for health gains in the ‘acceptable zone’ and the ‘unacceptable zone’ in order to derive societal preference orderings over different health gains. In that sense, the current QALY model could be altered to take these issues into account more directly. The basis of distributing health care over different patient groups also deserves attention in this respect. Where economic evaluation seems firmly rooted in the utilitarian approach, some have argued that an approach based on need or right to care could be considered a better approach, theoretically or empirically (e.g., Rawls, 1971; Sen, 1982; Daniels, 1985; Daniels, 1988; Hurley, 1998; Brouwer & Koopmanschap, 2000; Anand & Wailoo, 2000). The basis on which to distribute health care also determines the
usefulness of results of empirical investigations in distributive preferences. A noteworthy feature of our empirical study is that in assessing the acceptability of less than perfect health states, we referred to health profiles implicitly reflecting EQ-5D health profiles. However, the only profiles used were those in which health problems occur in only one domain while no problems exist in all other domains. To put it in terms of the EQ-5D nomenclature: we only used health profiles such as 21111, 31111, 12111, etc. Although one may argue that not all of these health profiles are very realistic (a feeling that may have been shared by the respondents by the way), we felt it to be important in this first exploration of the acceptability concept to vary only one health domain per question in order to be better able to interpret the provided answers. A result of using health profiles with only one affected domain is that the acceptance figures we presented are independent elicitations per health domain. Respondents most probably will not consider it acceptable that a single person suffers from all acceptable domainspecific health problems at the same time (as we have illustrated in Fig. 1, this would already lead to ‘acceptable’ quality of life scores close to 0 for people aged 70). Therefore, though health domain specific less than perfect health states appear acceptable, such reference points should not be regarded independent from the person’s (perhaps also acceptable) health problems in other health domains. Future research may therefore use health profiles in which several health domains are affected in order to investigate the acceptability of more realistic, imperfect health profiles. As an aside, it may also be interesting to see whether respondents in health state assessments, when having to indicate having no, mild or severe problems in some health domain to some extent reflect in their answers a normal level of functioning. In other words, whether an older person would indicate having no problems with mobility while a younger person with a similar functioning on the domain mobility would indicate at least to have mild problems. If this occurs, this may influence the objective assessment of health states, as well as subsequent valuation. The acceptability results for the health dimension ‘pain/discomfort’ were a bit surprising, also when comparing them to the EQ-5D references scores for this dimension, in the sense that lower levels of acceptability were expected for this category. It would be interesting to see whether this result will also hold in other investigations of this kind and whether the somewhat vague term ‘discomfort’ (in the Dutch version perhaps even more vaguely labelled ‘other complaints’) disturbs these findings. Some important issues, like (peoples’ perceptions of) treatment possibilities and the origin of certain health problems, may have influenced these results and could
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also be investigated further. First, the acceptability of less than perfect health states may be influenced by whether these problems can be cured. Indeed, if acceptability is a result of (societal) coping with inevitable deterioration of health, this may mean that health problems that cannot be cured will have to be coped with and therefore may sooner be considered acceptable. For example, in case mobility problems of elderly could be treated just as well as those of the young, the acceptability of reduced mobility in elderly may have been lower. This may also (partly) explain why anxiety and depression are less often considered acceptable. We did not collect qualitative data on the rationales behind people’s answers, which could have provided valuable information in this respect, also in explaining differences between answers from males and females for instance. Second, acceptability of health states may relate to the origin of health problems. Similar health problems may be considered more acceptable for people that may be held (partly) responsible for those problems themselves (e.g., health losses as a consequence of an unhealthy eating habits or smoking). Third, the relation between the acceptability of health states and ‘lifestyle use of health care’ is important. Health enhancement beyond what is considered normal or acceptable can be interpreted as lifestyle use of health care (Mitrany, 2001), although pleasure seeking in contrast to pain avoiding (Stolk et al., 2002a) may be considered a more appropriate name. Aims of policymakers as expressed in several recent studies (Titlow,
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Randel, Clancy, & Emanuel, 2000; Beecham, 1999) could conflict with the views of the general population on distributive justice. Rationing on basis of such lifestyle arguments may therefore lead to opposition in the general public, when not properly explained and justified. An explanation in which people are introduced into the realm of health policymakers may indeed change their views on priorities in health care (Cookson & Dolan, 1999; Dolan, Cookson, & Ferguson, 1999). Concluding, Sen has paved the way for interpreting health as a capability, which allows us to live life the way we want to. That this capability is subject to erosion over time is painfully evident in society. This seems to have shifted our (societal) reference point for health capabilities in advanced stages of life to points below perfect health, with the erosion of some health capabilities considered to be more acceptable than that of others. Given scarce health care resources, knowledge of these age and domain-specific reference points for health may be important in allocating health care resources in ways that better reflect societal preferences. That makes Sense!
Acknowledgements We are grateful to Paul Anand, Stephen Brch, Paul Dolan and two anonymous reviewers for useful comments on an earlier draft of this paper. The usual disclaimer applies.
Appendix A. Examples from the survey A.1. Acceptability These questions were posed as follows for all five EQ-5D dimensions. *
Can you indicate beyond what age you consider the specified level of problems with ‘mobility’ to be acceptable? (Please indicate below the relevant age categories) Age category Never Beyond Beyond Beyond Beyond Beyond Beyond the age of the age of the age of the age of the age of the age of 80 70 60 50 40 30
Some problems with walking Confined to bed For sexual activity and fertility the questions were, respectively. *
*
Can you indicate beyond what age you consider the specified level of problems with ‘sexual activity’ to be acceptable? (levels: some problems with sexual activity, not capable of sexual activity). Can you indicate beyond what age you consider the specified level of infertility in women to be acceptable? (levels: some fertility problems, completely infertile).
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