Table 5.

Sample quotes from participants on the disease progression diagnosis

Participant	Quotes
Health care provider counsel on progression
Patient	They just said that it was possible that it could get worse, that there was no cures, that there was just medications I can try to make me feel better
Patient	I don't really remember being told a lot about progression. I read a lot more about it being a probability actually. But my doctors really were just like, ‘Let's take care of what's going on right now,’ and didn't really talk about, like, the future
Reluctance to apply new diagnosis label of SPMS
Patient	After my first neurologist took me off of my medications and he said that all of my brain lesions were in remission, but we would just keep an eye on it. But he said, 'You know, you're probably in the Secondary category.' And I said, 'Secondary?' And then he explained that to me
Care partner	My understanding was that there's a reluctance to call it that [SPMS] because there's some sort of problem with insurance covering. Like, it's more difficult to get insurance to cover it if it's labeled that. So, I wasn't actually aware anyone had ever explicitly called it secondary progressive. Um … yeah. I didn't know she had gotten that official diagnosis yet. [laughter] I have still only gone to a couple of her neurology appointments around the time she was trying to get, uh, on disability. And I don't think the words secondary progressive were ever mentioned in the appointments I went to
Initial reactions to the news of progression
Patient	I was a very active person, a workaholic, and then when he told me about the progressive and especially that scare, oh that scared me. Even to this day if I'm thinking about it, it still frightens me
Care partner	It was really scary. I mean, I think about… I felt really alone. Um, I was worried about him but, you know, I also was worried for myself, like, my older self and, you know, just thinking about everything, like, financial stuff. Like, how do we keep him mobile and independent? How do we afford that? How do we make modifications to our home? And, um, you know, thinking about, you know, and I still do think about the future and what that's going to mean

SPMS Secondary-progressive multiple sclerosis