One author conducted 30 semi-structured, face-to-face interviews between August 2016 and July 2017. Study sites distributed 1418 surveys, of which 236 were either completed online or paper copies returned to the research team in the freepost envelope provided (response rate 17%). A further four surveys were completed by participants recruited via community advertising. Participants’ characteristics are presented in Table 1.
Key themes
Thematic analysis of the interview data highlighted a general sense of uncertainty among the participants in terms of awareness and understanding of cellulitis, and their experiences of primary (first episode) cellulitis. Analysed data relating to uncertainty about cellulitis were coded into four key themes:
low awareness of cellulitis before first episode;
uncertainty about the time of diagnosis;
concern/surprise at the severity of cellulitis; and
perceived insufficient information provision.
The authors explore these themes in detail below, and present selected quotes to illustrate each theme.
Low awareness of cellulitis before first episode
Despite being a relatively common skin infection, interview data showed low awareness of cellulitis among participants before diagnosis. In discussing their experiences of being diagnosed with cellulitis for the first time, participants commonly talked about it as something previously unheard of. Many were surprised that they had never heard of cellulitis before diagnosis and, as such, felt that it was generally not a particularly common or well-known condition:
‘Is it a new thing, cellulitis? I’ve never heard of it before. Because it’s a serious infection; it can come up anywhere on your body.’
(Participant [P] 12, male [M], 83 years, first episode)
Uncertainty about the time of diagnosis
For some participants, this sense of uncertainty and unfamiliarity about cellulitis seemed to be further compounded by their experiences around the time of diagnosis. Though some participants expressed relatively straightforward experiences and received a clear diagnosis, many appeared to have more negative reports, including delayed diagnosis, no definitive diagnosis, and in some cases misdiagnosis. A commonly expressed view was that the health professionals seemed to be unsure about diagnosing cellulitis, and that diagnosis had often occurred following a second opinion:
‘I can remember going to see a doctor there in the practice in the local village. I think, I’m not sure if it was this guy I’m thinking of, it might have been the previous GP, who said it may have been cellulitis, he wasn’t sure. But I think the second GP I saw had a background in, I forget the technical name, said: “I think we ought to get your bloods checked.” And so he checked them and, I remember, he confirmed that it was cellulitis.’
(P23, M, 48 years, recurrent cellulitis)
Participants’ uncertainty around cellulitis also seemed to be fuelled by the lack of a definitive diagnosis. Some participants reported that, though they had been told they had a skin infection (and all participants had been invited on the basis of having received a diagnosis of cellulitis), their health professional had never told them that it was called cellulitis, even though they would have appreciated knowing exactly what infection it was:
‘I’d never even heard of it, as I say, until it was mentioned about in the study information. I thought, OK, interesting, cellulitis. Prior to that, I didn’t even know what it was; I just thought it was an infection. It would have been useful just to have been given a name.’
(P16, female [F], 32 years, first episode)
Concern/surprise at the severity of cellulitis
Many participants expressed concern and surprise about the potential severity of cellulitis, particularly in terms of its sudden onset, illness progression, and the long duration of symptoms and treatment. This is perhaps unsurprising given that, for the majority of participants, cellulitis was an unknown/unheard of condition before diagnosis. A common concern reported by participants was the sudden onset — that is, going from feeling slightly unwell to very unwell within a very short time:
‘Because it was so quick and so sudden. I went from being fine to — 12 hours later — heading for the hospital, so it was so quick. Apart from being quite traumatic, I was off work for about 6 weeks, and I think mentally it got me a bit. I mean, I’ve never been that ill before, and it actually worried me a bit.’
(P4, M, 61 years, recurrent cellulitis)
‘And, really, the speed of it. I got an emergency appointment on the Wednesday and it was just getting worse, and on the Friday, that was me in [hospital]. So, it was a couple of days and went from 0 to bloody hell in a few days.’
(P15, M, 63 years, recurrent cellulitis)
Another common concern or cause for surprise was realising that cellulitis is a potentially serious condition and there is no quick fix. Participants expressed concerns about potentially severe consequences of illness progression and spread of infection, as well as length of time to recovery and the long duration of treatment. In particular, many participants spoke about having to take several courses of antibiotics and/or large dosages of antibiotics and experiencing symptoms for several weeks:
“As I say, that’s — it took — you could say it’s taken — from the total — 4 weeks at least for cellulitis, to be told that it was nearly gone or even maybe longer than that. I mean, even going past the holiday, 6–8 weeks and you just think, it’s taken all that time, I suffered for all that time.’
(P17, F, 60 years, recurrent cellulitis)
‘Doctor gave me a dose of 7 days antibiotics, a higher dosage. This was after the 5 days antibiotics. She said: “On these ones, you should see an improvement within 48 hours.” That didn’t happen, so I went straight up to A&E. They did all the blood tests and they come back and they said: “Yes, you’ve got a really severe case of cellulitis.” Stuck me on a drip of antibiotics and a drip of penicillin for 3 days. Every day, for 3 days, I had to go back at 3 o’clock in the afternoon, get hooked up on these drips for half an hour each time.’
(P1, M, 47 years, first episode)
Perceived insufficient information provision
The interviews showed patients felt they were not given information on causes for cellulitis, or treatment and prevention, which seemed to exacerbate participants’ uncertainty about cellulitis. Most participants reported they had received little or no information at point-of-care, particularly around the potential causes of cellulitis, the fact that people can experience repeat episodes of cellulitis, and potential strategies to prevent recurrence. For some participants, this perceived lack of information seemed to be linked to having not received an official diagnosis of cellulitis:
‘I didn’t even know you can get it again and again; you told me that. I thought you get it once and then it’s gone, you won’t get it again. I’ve only learned you can get a recurrence through you, which the doctor should tell you, really.’
(P11, M, 53 years, first episode)
‘I was wearing boots, and where they touched it, it was really, really tender, and that was when he said it was cellulitis. And he gave me antibiotics, but that’s all he said. He said “it’s a skin infection”, and — and that was it. I don’t know why I had it or … and then I got it back again, that was about, probably about a year ago.’
(P5, F, 67 years, recurrent cellulitis)
The lack of information provided by health professionals led some participants to seek out their own information about cellulitis from other sources, such as friends/colleagues and online resources, but many expressed doubts about the credibility of online information:
‘I received absolutely no information. As I say, it was when the research nurse came along and said: “Oh, we’re doing the study.” I went: “Oh, cellulitis, I’ve never even heard of it.” And then it was really me Googling it and trying to find out more information. If you put a Google search in for it, you get a lot of beauty treatments for cellulite [laughter] and I was thinking, “Oh, is it linked to this?” But it must be something to do with your skin because of that. But trying to actually find good, sort of basic information on the net was really difficult as well.’
(P19, F, 53 years, first episode)
Participants who did receive advice on managing symptoms and preventing recurrence expressed concerns about the conflicting nature of this advice — for instance, about limb elevation (rest versus exercise) and about prevention (foot hygiene). This is perhaps unsurprising, given the lack of evidence around cellulitis:
‘The one thing the doctor didn’t do, which I — was kind of a mixed message — he said, I must rest my legs up as much as possible, but didn’t say “so, I’m going to sign you off work”. So, as a consequence, I was teaching, which involves standing up all the time. So, I was probably exacerbating it and making it last a lot longer, because I didn’t — I wasn’t told that it was something that I should have time off for.’
(P2, M, 45 years, recurrent cellulitis)
‘And I kept getting conflicting advice as well. One doctor would say “keep your leg up”, the other doctor would say “go and do some exercise”.’
(P13, F, 32 years, recurrent cellulitis)
A desire for detailed and reliable information on cellulitis prevention provided by GPs or other health professionals was evident in the data. Many participants expressed a desire for more information in the form of a leaflet or website. Some participants reflected on the perceived lack of cellulitis information provided to patients, compared with other chronic and acute health conditions:
‘Well, I think — information — maybe not so much as how you probably got it, because there’s probably different — I mean, I’ve looked it up on the internet; you can get it through lots of different things, but maybe a bit more information, the care during, while I had it, and also the care for afterwards. Maybe you’re a person more prone to get it, you may get it again; these are the things you can do to prevent it, whatever, because if you don’t know what you’re doing and you do get it again, you’re wasting their time. My partner had pneumonia earlier last year and he got a leaflet about pneumonia, so why can’t they do one on cellulitis?’
(P17, F, 60 years, recurrent cellulitis)
