Table 2 Main categories with sub-categories, with example quotes from the interview
Category | Example quote |
|---|---|
Rationing treatment? | “The challenge is, in a way, to be able to pick out those who have insufficient effect. And what is sufficient effect? There are these borderlands that are very difficult” |
The weakness of “objective” criteria | “These measurements are not perfect, and they are a pseudo-measure, we think, for quality of life, really. Which is very hard to measure” |
Members’ overall assessment of the group | “The expert group I think has worked very well, I think it’s a very good model for other similar rare diseases” |
New ethical dilemmas | |
Quality of life | “But the [SMA] 1’s are the dilemma that we, that I, prevent from dying, and that we often ‘convert’ to poor [SMA] 2’s” |
Disagreement | |
Resource use | “In any case there are delays, and that [SMA patients] take up a very large part of our department, that’s clearly the feedback from our colleagues, they think it’s far too many Spinrazas [i.e., nusinersen treatments]” |