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Table 2 Participant rationales for the perceived importance of highly ranked attributes

From: Societal perspectives on disease and treatment attributes characterizing rare diseases: a qualitative study from the United States

Themes (mean ranking) Sample quotes
Disease severity (8.7) I think that research [into severe disease is] more important because…you really want to try to help people who are suffering…live their life as best as they can
[A severe disease] impacts more than just the person who has it. – Participant 10 (San Francisco)
Treatment availability (8.4) If there's no treatment available, it makes me wonder why isn't anyone doing any research to find out at least something that may help alleviate some of the suffering that a person's going through – Participant 22 (Seattle)
If you have a medication that can help, then it’s highly important that patients who need it get to have it, and [we] need to figure out a way that they can afford it and have access to it… And not too many red tapes (sic) to get it. – Participant 6 (Dallas)
That’s the one that hit me, where I don’t think they got a fair share. For the people that are passing because of lack of treatment, I think…it was because we should have done better as a society trying to find treatment for it. It’s not their fault that people got greedy. It wasn’t their fault that we can’t help them…if we can find a way to do it fairly. Participant 28 (Seattle)
Impact on life expectancy (8.4) You want to be able to save a life, especially a young life – Participant 15 (San Francisco)
It’s really not fair. It’s not fair to the parents who have to suffer through watching someone they brought into the word decline. It’s not fair to the person who is declining…Everyone should ideally have a life expectancy that is pretty equal. Participant 10 (San Francisco)
Impact on HRQoL (8.1) I would be miserable if I couldn’t do the things I normally do…I don’t know that I’d want to live many years depending on someone else to have to cart me around and take care of me.- Participant 5 (Dallas)
When people, or especially when kids, can’t do certain things…or participate in certain activities, that’s not fair…people should all have the same opportunities to participate in life…and if something can be done about it, maybe they could push for the research into it? – Participant 20 (Seattle)
  1. See Fig. 1 for a complete list of attributes and their rankings