Table 3.

Quotations supporting the “Triggers & Exacerbating factors” and “Constant Vigilance & Self-Management” themes of the patient experience of SSc-RP

Subtheme	Q	Subject	Quotation
Triggers & Exacerbating factors of SSc-RP
Cold	29	N1 S4:	Now er, the medication has helped to the point of where … I can handle temperatures down to about around 50 [°F] or so. If it’s 50 or below I will have issues when I go outside into the cold.
	30	B2 S4:	Even the tiniest draught and that’s me gone even if it’s blazing sunshine and I’ve got a draught . It’s the regulation of the body temperature…it just can’t cope with change.
	31	P1 S2:	…it would be 90 something degrees [°F]. You come out, you’re in the sun, and a breeze goes by, and right away your hands start turning colours
	32	N1 S7	But, when I go into a situation of a grocery store when you go by the freezer section, you know, I can tell, I start turning purple, my fingers start turning purple.
	33	P1 S1:	The meat department or anything that’s refrigerated. A lot of it is … It almost feels like you’re helpless when you’re trying to warm them up, but you don’t really know if it’s going to work or not.
	34	N2 S7:	.and every time I would go in a grocery store around the freezer part I could not … I mean the minute I’d get to there …[voices murmur agreement]. It would actually turn so black.
Stress	35	B2 S6:	My hands don’t necessarily have to be cold, I can be in a situation like this, just nerves can make mine go.
	36	B2 S5:	Yes, stress, very much if you’re put in a stressed environment then that will bring the purpleness (sic) on the fingers
	37	N2 S5:	I don’t know how much … is like psychological or not, but I know that when I’m feeling more relaxed I, physically, I feel as though I’m doing better. But when I’m stressed for whatever reason like, it’s harder to manager to my symptoms.
	38	N3 S3:	I haven’t noticed it, maybe it could be something I’m not aware of, stress bringing on the condition
Unpredictability	39	N1 S6:	And I’ll get attacks and it’s like I’m not cold, what is causing me to have a Raynaud’s attack? And like I’m totally not cold, it’s hot, it’s in the summer, so that, I don’t know what sets that off, I really don’t.
Constant Vigilance & Self-Management
Maintaining warmth (preventative measure)	40	B1 S6:	And then if I know that I’m going to be outside shooting then I make sure I’ve got, you know, hot pads and gloves and everything else, so you just kind of adapt to it really.
	41	B2 S7:	I have the heating on day and night and I’ve always got a thick coat and gloves and then I sort of forget about it really, I’ve done all I think I can do.
	42	P1 S2:	I have mittens all over my house. I have great friends who knit me mittens and so I go to the grocery store with mittens on. People look at me like I’m really dumb, but that’s life. Who cares if they think I’m dumb wearing mittens, but they work.
	43	P1 S1:	The first 5–10 years [were] really rough, and I was stubborn. I just wanted to wear a t-shirt and a jacket and some gloves, and you have to accept, no, I need to have a t-shirt, a longer shirt and a hoodie and a jacket and mittens, and everyone else is wearing some lighter clothes and I’m there totally bundled up, but at this point that’s kind of just my daily life, so I think it’s actually gotten easier over time.
Seeking warmth (alleviating measure)	44	N3 S2:	If it sets in just putting a glove on, putting gloves on, just won’t do it….I have to put heat to my hands somehow with something, to apply heat to get that pain to go away.
	45	P1 S1:	Like everyone’s said they’ll pretty much stay that colour until I do something; run them under hot water or put some gloves on or put a jacket on, especially in the grocery store, I notice that all the time.
	46	N3 S1:	Oh no, you’d have to do something in order to warm them up, and you can’t just, like when your fingers or hands go numb, you shake them out, it’s not a shake it out kind of scenario, it’s a ‘I got to do something.’
	47	B1 S5:	Well one thing that is quite easy I find is a wash basin of warm water, you know, in an emergency if you’ve obviously got nothing else…..It comes back you know, all right I find.
Avoiding cold	48	B1 S4:	I tend not to leave the house if I don’t have to in the winter
	49	P1 S6:	My brother lives in xx and I just won’t visit him unless it’s like the height of summer because it’s freezing up there and there’s nothing I can do to get warm enough so I just don’t go there.
	50	P1 S4:	I don’t ski anymore, either…’cos you’re taking your gloves off, if your ski falls off or whatever, so even if you have something in your gloves to keep them warm, no, so I avoid winter activities, let’s put it that way.
Limited effectiveness of self-management	51	B1 S2:	I had three pairs of gloves on the other day and I’d still got cold hands
	52	P1 S3:	I think I could possibly prevent attacks all day, but nobody would be able to live with me [if I maintained] the house at 90 degrees [°F]. (laughter)
	53	B2 S5:	I find that there’s nothing you can do to stop the attack because with me there’s no tell-tale sign, there’s no tingling, it’s just I’m here and you’re gonna (sic) have to deal with it, whether it takes ten minutes, twenty minutes it is as long as it lasts.
	54	P1 S2:	I can’t prevent them, but as soon as they [SSc-RP symptoms] start I try to do something about it, try to warm them up
	55	B2 S4:	The best thing is to get out the environment that’s causing it but you can’t always do that, you know so at that stage there is no hope.

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.