Table 5.

Quotes supporting themes of “Uncertainty” and “Adaptation” relating to the patient experience of SSc-RP

Subtheme	Q	Subject	Quotation
Uncertainty
Consequences of SSc-RP (especially ulcers)	76	P1 S1:	..if I knew there was not going to be any ulcers it [SSc-RP] probably wouldn’t bother me that much.
	77	P1 S3:	Because I do worry about getting ulcers and that’s the whole name of the game. If it [SSc-RP] was just inconvenience and not perhaps long term damage then I wouldn’t probably care. I’d deal with it..
	78	B2 S6:	I just fear, when I’ve got them and they’re coming very regularly, I just fear the ulcers, because I get ulcers
	79	B1 S5:	I think I worry whether the Raynaud’s is sort of connected with the general sort of aging process, which you know, we all have to accept as we get older.
Efficacy of treatment	80	N1 S5:	What other treatments can we get, if one don’t work, what’s next? I mean, I’m on so much medication … I’m just confused on what … what’s working some days and what’s not working.
Uncertainty around changes in usual activity	81	P1 S3:	. It does concern me going on trips. If I get into a really cold room, and what’s going to happen. I just want to comfortable and be safe, that’s all.
	82	N3 S3:	in my case I had a high level of anxiety because I was driving someone else’s car and the heater didn’t work, and it was cold outside that day, and within such a short span of time with the heater not working my hands begin to sort of numb up and I said I’m not going to be able to drive that far. So then I began to get stressed saying my car’s in the shop and if this thing’s cold I won’t be able to drive this car so that caused me stress.
Anxiety	83	P1 S5:	it’s always … what kind of clothes? and who’s going to be with me?… So there’s a lot of anxiety that comes with it, and maybe that’s a lot of reasons I’m at home a lot, too. I don’t have to worry about it.
	84	N3 S1:	I do believe that anxiety is associated with Raynaud’s …. you have to always be aware of something that may affect you… it’s almost like packing for a new born baby, you have to make sure you have everything you need with you because you don’t want to be caught some place you don’t have what you need
Adaptation
Doing things differently	85	N3 S2:	I have bottle openers in my house … it opens bottles of different sizes … you learn and you just, you just keep adapting
Making trade offs	86	B1 S1:	I do save my washing up until I feel that I really do need to go and warm my hands up a bit
	87	N3 S2:	I remember thinking ‘no buttons, no buckles, no shoestrings’ …. Anything like that just had to go.
	88	B1 S6:	And I’ve had to change how I exercise because I can’t climb anymore. So I swim instead.
	89	P1 S2:	…if it’s cold I will go for a walk in the snow, I just probably won’t roll around sleigh riding with my grandchildren. But I just can’t let this control my life. I’ve got to keep going and doing what I enjoy,
Seeking help	90	N3 S2:	I need to do something like put air in my tyres…I can’t really do something like that if it’s really cold and I have all these gloves on….If I can get somebody to help me with something like that, well then, I would.
Not letting it beat you / acceptance	91	B1 S3:	But I’ve just learned to get on and do things. It’s painful but I won’t give in to it
	92	B2 S5:	If I have an attack and I’m with somebody and they say, “Oh what’s wrong?” I’ll say, “Oh I’ve got my purple paws again.” And put them in my pocket and I say, “Don’t worry, you carry on and I’ll be alright in about quarter of an hour.”
	93	P1 S1:	Any time somebody sees it for the first time they get really freaked out, and it gets kind of old hearing, “Oh, you should get that looked at”, or “That’s not normal”. And you’re like, “I know, I’ve known that for a long time. I’ve had it looked at. It’s not necessarily under control but I’m familiar with it.” So that can get old after years and years of that, every time you meet somebody new. It’s not that big of a deal.
	94	N2 S7:	Even when my hands were real, real black, I never was embarrassed about, you know. I’m not that type of person that gets embarrassed about it. That’s just a part of life. Everybody got something, you know.

Q refers to the numbered quote cited in the text. P1 denotes Pittsburgh, group 1; N1, N2, N3 denotes New Orleans groups 1, 2, and 3, respectively; B1, B2 denotes Bath groups 1 and 2; S# denotes subject (participant) number within each focus group.