Seventeen participants took part in the NGT (Table 1). Some of the experts had dual roles, e.g. as clinician and policy advisor. Experts invited who declined to take part, mainly did so because of time issues or because they could not attend the conference.
ROUND I. Palliative care and the EQ-5D
Generic tool needed
Experts mentioned that an advantage of the EQ-5D is that it is a generic and simple to use tool. Moreover, “reasoning from resource allocation management, this metric is certainly suitable because one metric is needed. Otherwise there’s no end to it. Where does that leave us?” (P5). At the same time, experts argued, palliative care is significantly different from other fields of healthcare. Values important in palliative care, such as psychosocial and spiritual, are missing in standard ways of measuring health-related (HR) QoL, and “by lumping everything together, you’re not measuring anything” (P11). More than that, it was added in the international meeting that “in the UK, the EQ-5D is advocated, but they acknowledge that there are limitations to it. They justify using it by not using it blindly” (E5) In other words: assessing whether the EQ-5D is appropriate is always needed.
From specific to generic: mapping
Next, it was mentioned that other, specific palliative care related instruments could be used in practice, and subsequently translated into EQ-5D scores or ‘utilities’. In health economics, this method is known as mapping.(16) Mapping techniques are conducted to link outcomes from different measures, by developing algorithms to translate disease-specific measurement outcomes into EQ-5D utility values. In other words: context specific instruments are used as ‘under layer’ for the EQ-5D. In that way, QoL is measured as a ‘pyramid’ in which the EQ-5D is the top. This makes it applicable on individual as well as on policy level. Experts expressed this option of mapping is very welcome since “we have to make a translation from individuals to policy. (…) then you need an instrument in which, if the patient looks up [in the pyramid, added by authors] thinks ‘well, I can see myself in this’” (P1)
Another point raised was the lacking subjective valuation in the EQ-5D. That is: how important are the EQ-5D’s domains to patients? “I [a general practitioner] miss the person’s context and his or her goals. For me, that are essential questions which I discuss with patients (…) that’s why I would advocate to explicitly address the meaning people give to the domains in these questionnaires. Otherwise, the patients’ interpretation is totally unclear” (P1). Another expert described it as follows: “if we are limping with one leg and are happy, then the limping doesn’t matter!” (P11).
The QALY’s ‘Q’ could be defined in a different concept of disease and health, it was argued, such as the capabilities approach.(17) Here, measuring QoL is conceptually linked to Sen's theory, which defines wellbeing in terms of an individual's ability to be and do the things that are important in his or her life.(18) Others though, saw some drawbacks, since measuring capabilities is not the same as measuring health. “However, when considering Huber’s new definition of positive health [health as the ability to adapt and self-manage, in the face of social, physical and emotional challenges] it might be appropriate” (P1).
ROUND II. The QALY and linearity in valuation of time issues
Initially, a discussion about linearity of valuation of time took place. Kahneman’s Peak-End Rule was discussed.(19) His theory showed that valuation of time (Kairos) is not linear, but that valuation of experiences are mostly influenced by most intense points (positive or negative) and their end. Translating this to the palliative care context: when approaching death, a distortion of how time is experienced and valued takes place. One expert mentioned that “there is no linearity [in valuation of time]. It is not only not there in palliative care, it is absent in everything. So, is it specifically a palliative care problem?” (E3).
Chronos and Kairos
However, experts noted the issue about linearity of valuation of time is not as relevant an issue for the QALY if a distinction is made between Chronos (clock time) and Kairos (embodied time).(20) Because “perception and valuation of time should be integrated in the QALY’s ‘Q’ … Clock time should serve as an absolute basis for how you value time. Valuation belongs in the ‘Q’!” (P8). In other words: “Chronos is clock time, Kairos is quality time: the time that’s so important to people” (P9). Experts noted that further research should be conducted into the issue of linearity of valuation of time, and how to integrate it in the QALYs ‘Q’.
Furthermore, it was emphasized it should be possible to denominate Kairos negatively. It was also posited that palliative care only involves Kairos, not Chronos. However, the majority of experts disagreed with this statement, since this is different for everyone and “living longer [Chronos] may be part of QoL” (P1). However, the idea of putting different weights on time during the disease trajectory was proposed since “towards the end of life, the life-years-sum becomes increasingly smaller, and the Q starts to play an increasingly important role ... somewhere along the route you lose sense” (P7).
ROUND III. Applicability of the QALY in palliative care
Some experts, as opposed to earlier arguments with regard to the EQ-5D, argued we should “not try to put everything in one frame [the QALY in general], but instead compare different frameworks for different groups” (E1). The QALY has a simplistic approach by merging all sorts of health care in one framework. But should we be even comparing across groups?
QALY in policy
It was concluded that society needs a concept like the QALY, since cost-effectiveness is and should be considered when deciding on how to distribute resources over health care. However, it was also noted we might not want to put a hard threshold on the worth of a QALY, but instead use it as guidance. “In the U.K. a threshold of £20.000/£30.000 is set, but it is constantly disregarded because of political difficulties in drawing a strict line” (P5). In the Netherlands, an advising committee has ethical discussions based on various figures, “all grey areas are being discussed in these meetings. And they have to. Because doing that exactly is the rationale of its existence” (P5). In other words; the QALY is not and should not be used as a technocratic tool, but as part of a broader, very thorough assessment.
Moreover, “the question about how much one QALY is worth, is still in full swing” (P5). For example, the Dutch Council for Public Health and Health Care (an independent advisory body of the Ministry of Health, RVZ) advised a threshold of €80,000 per QALY. “However, this threshold was not adopted by the minister, because of a lack of support in the ministry” (P3).