Hi Jon, I’m also concerned that subjective wellbeing measures may lose interpersonal comparability when someone experiences extreme suffering.
But it’s not clear to me from the Lancet report or your description of the alternatives how we’d measure / construct them. Would it be like DALYs or QALYs? Would we ask the public to make time tradeoffs? Would we ask people with painful conditions to make tradeoffs or evaluate their experience?
I’m more open to alternatives here than I usually am, but I’d be very surprised if the best measure didn’t ask the people with extreme suffering (or barring that, those close to them) about their experiences. This is because extreme suffering seems almost by definition something someone doesn’t understand without having the misfortune to live with/despite it.
Thanks for the feedback on interventions! We will think about this when we do further work.
(One minor point: it wasn’t clear to me why going from 0 to 10 on a pain scale represents an 11-point change.)
Oops! You’re right. An 11-point scale (0 to 10) can only afford at most a 10 unit change.
Yes, I agree. Asking people who don’t suffer from a condition to evaluate it is already an imprecise approach, and it just doesn’t work for extreme suffering. I think self-evaluation is essential. A study on people with cluster headaches who had also experienced other sources of pain, including childbirth, kidney stones and gunshot wounds, provides a means of normalising the scale by re-setting the meaning of 10 (we reproduced the graph in our policy paper on cluster headaches). The measure was pain intensity, but the same approach could be used for suffering. Qualitative descriptors of different pain/suffering levels can help ensure that people mean the same thing in their self-evaluations. In my opinion, time tradeoffs can be helpful for ranking intensities of suffering, but I don’t think they can substitute for direct intensity evaluations.
Hi Jon, I’m also concerned that subjective wellbeing measures may lose interpersonal comparability when someone experiences extreme suffering.
But it’s not clear to me from the Lancet report or your description of the alternatives how we’d measure / construct them. Would it be like DALYs or QALYs? Would we ask the public to make time tradeoffs? Would we ask people with painful conditions to make tradeoffs or evaluate their experience?
I’m more open to alternatives here than I usually am, but I’d be very surprised if the best measure didn’t ask the people with extreme suffering (or barring that, those close to them) about their experiences. This is because extreme suffering seems almost by definition something someone doesn’t understand without having the misfortune to live with/despite it.
Thanks for the feedback on interventions! We will think about this when we do further work.
Oops! You’re right. An 11-point scale (0 to 10) can only afford at most a 10 unit change.
Yes, I agree. Asking people who don’t suffer from a condition to evaluate it is already an imprecise approach, and it just doesn’t work for extreme suffering. I think self-evaluation is essential. A study on people with cluster headaches who had also experienced other sources of pain, including childbirth, kidney stones and gunshot wounds, provides a means of normalising the scale by re-setting the meaning of 10 (we reproduced the graph in our policy paper on cluster headaches). The measure was pain intensity, but the same approach could be used for suffering. Qualitative descriptors of different pain/suffering levels can help ensure that people mean the same thing in their self-evaluations. In my opinion, time tradeoffs can be helpful for ranking intensities of suffering, but I don’t think they can substitute for direct intensity evaluations.