Table 1 Quotes from RD patient representatives justifying their consultation throughout therapeutic development (information from [60, 64, 65])
Author(s) | Study type | Cohort | Speaker | Quote |
|---|---|---|---|---|
Menon et al. [60] | Mixed methods | Patient communities | Unnamed | “I think the patient is critical, and the caregiver, to put a framing around what that means to them versus just the hardcore data” |
Gaasterland et al. [64] | Qualitative | Patient Think Tank (PTT) members of ASTERIX project | PTT member | “Yeah, I suppose that’s the key thing really, is making sure that patients have the chance to give their views, and then that those views are listened to. And…kind of more practical things. They…the patients wanted to make sure that…the kind of outcomes were sort of relevant in their life, so, you know, the idea of looking beyond just the clinical outcomes” |
Morel et al. [65] | Mixed methods | Patients | Patients | (1) “Anything that engages the sufferer in discussions determining how to handle treatment/medication can only be beneficial to the patient” |
(2) “But ‘minor’ side effects can be extremely wearing and challenging when they occur every day. Mental side effects are very difficult to manage” |