Tag Archives: qalys

no capability not death

Just a quick note following a twitter exchange I had regarding whether capabilities as valued by the ICEPOP team (the ICECAP-O was referenced in the original paper) are “QALY-like”.

Key team members never intended the ICECAP-O scores to be multiplied by life expectancy (in the way, say, an EQ-5D score is). Whilst we have recognised that people would like to do this, technically this is a fudge and comes down to definitions and the maths:

Death necessarily implies no capabilities but no capabilities (the bottom ICECAP-O state) does not imply death. But more fundamentally, the estimated ICECAP scores are interval scaled, NOT ratio-scaled (for reference, read the BWS book): we used a linear transformation to preserve the relative differences between states but the anchoring at zero would not be accepted by a math psych person: they would say defining the bottom to be the zero doesn’t make it so.

Since different individuals technically had different zeros (the BWS or any discrete choice estimates have arbitrary zero) – death – multiplying a technically averaged interval scale score (our published tariff) by a ratio scaled one (life expectancy) to compare across groups/interventions is wrong: If there is heterogeneity in where “death” is on our latent capability scale (which we can’t/didn’t quantify – unlike the traditional QALY models estimated in the proper way) then comparisons across groups that don’t have the same “zero” gives incorrect answers. We can compare “mean losses of capability from full capability” which is why I personally (though I don’t speak for the wider team here) prefer the measure to be used as an alternative measure of deprivation, like the IMD in UK or SEIFA in Australia.

Is it ethical that uninformed members of the public decide just how bad your disability is?

Cross posted from The Ethics Blog

Last time I raised the possibility of changing child health policy because teenagers are more likely than adults to view mental health impairments as being the worst type of disability. However, today I consider adults only in order to address a more fundamental issue.

Imagine you had an uncommon, but not rare, incurable disease that caused you to suffer from both “moderate” pain and “moderate” depression and neither had responded to existing treatments. If policy makers decided there were only enough funds to try to help one of these symptoms, who decides which should get priority?

In most of Europe, perhaps surprisingly, it would not be you the patient, nor even the wider patient group suffering from this condition. It is the general population. Why? The most often quoted reason will be familiar to those who know the history of the USA: “no taxation without representation”. Tax-payers supposedly fund most health care and their views should decide where this money is most needed. If they consider pain to be worse than depression, then health services should prioritise treatment for pain.

Thus, many European countries have conducted nationally representative surveys to quantify their general public’s views on various health states. Unfortunately Swedish population values were only published last year, almost two decades after the first European country published theirs. Although late, these Swedish population values raise a disturbing issue.

Suppose the general population is wrong?

Why might this be? Many people surveyed are, and always have been, basically healthy. How do they know whether depression is better or worse than pain? In fact, these people tend to say pain would be worse, whilst patients who have experienced both say the opposite.

The Swedish general population study was large and relatively well equipped to investigate how people in ill health value disability. And, indeed, they do value it differently than the average healthy Swedish person.

So is it ethical to disenfranchise patients in order that all citizens, informed or not, have a say?

Why not use the views of patients instead?

Well actually the stated policy in Sweden is that the health values ideally should come from the individuals affected by the health intervention (patients). So Sweden now has the information required to follow its own health policy aims. Perhaps it’s time politicians were asked if it is ethical to prioritise pain over mental health, just because various general populations thought this is so.

As a final thought, I return to the issue of “what funds healthcare”? You may be surprised to learn that the “general taxation” answer is wrong here too. But that strays beyond health care and ethics and into the dark heart of economics, which I will therefore discuss elsewhere next week!