We interviewed 15 participants who had undergone revision knee replacement surgery in the previous 12 months. Interviews were conducted between January and May 2023. Characteristics of the participants are summarised in Table 1. Participants were a median of 8 months post-surgery (range: 6 to 10 months). The median age of participants was 68 years (range: 54 to 81 years), and 53% (n = 8) were females. Participants were from a range of areas of social advantage as measured by the Index of Multiple Deprivation (IMD): median: 4 (range: 1 (1 participant) to 5 (3 participants)); 1 being most deprived and 5 being least deprived (Table 1). Revision knee replacement surgery was most commonly single stage (n = 13, 87%), and was undertaken for osteoarthritis progression (n = 6, 40%), prosthesis loosening or wear (n = 5, 33%) or instability (n = 2, 13%). Participants were a median of 9.5 years post primary knee replacement surgery (range from 6 months (1 participant) to more than 15 years (4 participants)). In the time since their primary knee replacement two participants had undergone four or more additional surgical procedures on their knee.
Table 1
Characteristics of participants (n = 15)
Pseudonym | Gender | Age | Work status | IMD quintile* | Revision procedure | Indication | Months since revision surgery | Years since primary knee replacement | Number of operations since primary joint replacement |
Gwen | Female | 76 | Retired | 4 | Single Stage | Instability | 8 | 13 | 1 |
Rory | Male | 63 | Working fulltime | 3 | Two Stage | Loosening / wear | 7 | 2 | 4 |
Anne | Female | 68 | Retired | 2 | Single Stage | Loosening / wear | 8 | 5 | 0 |
Neville | Male | 67 | Retired | 4 | Single Stage | Loosening / wear | 6 | 9 | 2 |
Bob | Male | 76 | Retired | 5 | Single Stage | Instability | 8 | 1 | 1 |
John | Male | 81 | Retired | 5 | Single Stage | OA Progression | 8 | 5 | 0 |
Elaine | Female | 75 | Retired | 5 | Single Stage | OA Progression | 8 | 1 | 0 |
Helen | Female | 81 | Retired | 4 | Single Stage | Loosening / wear | 8 | 0.5 | 0 |
Mark | Male | 54 | Unable to work | 1 | Single Stage | Loosening / wear | 7 | 17 | 5 |
Dianne | Female | 66 | Working part-time | 4 | Single Stage | Fractured bearing | 10 | 10 | 0 |
Frank | Male | 72 | Retired | 4 | Single Stage | Dislocated bearing | 8 | 1 | 1 |
Gayle | Female | 67 | Working part-time | 5 | Single Stage | OA Progression | 6 | 16 | 0 |
June | Female | 76 | Retired | 4 | Single Stage | OA Progression | 6 | 18 | 1 |
Trevor | Male | 62 | Working part-time | 2 | Single Stage | OA Progression | 6 | 17 | 0 |
Ruth | Female | 68 | Working part-time | 2 | Single Stage | OA Progression | 10 | 2 | 1 |
* Index of Multiple Deprivation presented by quintiles: quintile 1 being most deprived and quintile 5 being least deprived.
We report six themes, illustrated with verbatim narrative. Our findings demonstrate the over-arching sense from interviewees of “soldiering on”, while managing the challenges of navigating the health system, the struggle to be recognised as the expert in their own knee, shifts in what they expect from surgery and feeling that they are now no longer the person they used to be.
1. Soldiering on
This theme describes the need to “just get on with it” in spite of pain and a sometimes-overwhelming hierarchy of health needs. Participants described that they “kept going and going because I had to, there was no choice”, and reflected that “it was hard, having to cope every day”.
I don’t let things get on top of me, I just carried on as best I could. I think I had to rest a lot, which was unusual for me, I have always sort of got on with life. Pain-wise, I was on so much paracetamol. I had to come off paracetamol because it was affecting my liver. (Helen)
There was a sense of having to juggle a fluctuating hierarchy of health and social priorities. Several participants felt they “needed the knee sorted so I could deal with other concerns”. Participants described the challenge of managing multiple health conditions, both their own and those of family members, and having “to prioritise what is most important to focus your energy on”.
My husband was diagnosed with memory loss… And I think that impacted on my own reactions, because I perhaps should have gone and seen somebody sooner. I suddenly got a lot of pain in that left knee but went on with it because I decided that the time had come for him to be given a chance. And so, it wasn’t until very recently that I’ve been and reported that change in the knee. I haven’t thought about it and now I’m wording it, it’s come back just how hard it was. (Gwen)
2. The challenge of navigating the health system
This theme describes the challenge of navigating the health care system, exacerbated by having to fight to be heard. Participants described “repeatedly going back, time and time again” but struggling to have their knee symptoms taken seriously by health professionals. Some had to repeatedly request to be referred to other health professionals, or for further investigation of their symptoms. Some felt frustrated and angry that they “just couldn’t get through to them that the knee wasn’t right.”
I kept telling them… I talked to two GPs, went to see a physio and had an x-ray, and I kept telling them, “This isn’t an injury.” Then I kept trying to get the results for the x-ray and I kept ringing the GP and they said, “If it’s okay, we won’t get the results,” and I said: “Look, it’s not getting any better. I’m sure it’s not an injury. Something’s gone wrong with my knee replacement,” but I couldn’t get through to them. (Dianne)
As a result of this battle to be heard and taken seriously, some participants had lost faith in certain health professionals, and others in the health system as a whole.
When you’re suffering in so much pain, and it’s affecting your life, and nothing they do makes you feel no better… you start losing faith in your GP, and as I said earlier, because my GP was off – I kept seeing different doctors. One would say, “Have you tried so-and-so?” I’d say “no”, and then, “We’ll try that”, and then naproxen made me bad in my stomach. Then I tried something else that gave me diarrhoea, then I tried something else. It’s all crap. They just don’t want to refer you. (Trevor).
3. I am the expert in my own knee
Participants challenges navigating the health care system were further exacerbated by the struggle to balance various clinical opinions with their own health experiences and expertise. Participants emphasised the desire to be ‘in’ the conversation with health professionals, and to be empowered to ask questions and discuss plans.
It seemed like because I was already a revision returner, they put me at the bottom of the list, I was a bit upset that he didn’t go into detail as to why this was giving me so much problem. Whether there wasn’t anything on the x-ray, I find that … well knowing my body, I find that difficult to understand when I’ve been through so much pain, that there wasn’t anything that was showing up on the MRI and the x-ray. I’m not a medic, but I know my body.” (Anne)
However, participants wanted to be seen as a ‘good patient’ who did not complain or ‘cause trouble’. Some described positive traits to support a moral character as a ‘good patient’ despite the challenge of managing their symptoms, and frustrations at feeling unheard.
They said, come back in a years’ time and I thought, oh my god, why don’t they believe me. I’m not the sort of person that makes a fuss … I just trust people if they’re a medic and they’re in that position, they know what they’re talking about. I’m somebody that hardly ever goes to the doctor, I’m not on medication, never been on medication…. I’ve been active all my life. So this was a huge blow to me that suddenly my life had stopped. (Anne)
There is a lot of scary news on the television and radio about don’t go and trouble your doctor, so while I was able to get up and about, I didn’t want to bother them. (Helen)
4. Shift in what I expected from surgery.
Participants described adjustments in what they hoped to achieve by undergoing revision knee joint replacement. Some felt that they had approached their primary knee joint replacement “naïvely, hoping for complete pain relief”, whereas for subsequent surgeries their expectations and hopes were for “a degree of pain relief”, or “for the knee to be tolerable”.
Let’s just take this latest one, this left third knee, I just hoped for some of the pain relief that I had had over the previous 11 years. Pain relief so that I could get on and do the things I knew I could do okay. (Gwen)
I think it’s getting back a degree of normality again. I knew I wasn’t going to be totally pain-free or stiffness-free because I never have been. I wasn’t over-optimistic, I wasn’t expecting miracles. (June)
At times, this shift in expectation meant participants expressed gratitude for even minor improvements, knowing how bad it had been, and how bad it could have been.
I guess my knee … despite everything I may say, they may not have returned to the knees … they’re no longer the knees of a 32-year-old or anything like that, but they’re a bloody sight better than the ones I had before I had them changed. (Bob)
My knee is still much bigger than the other one, but it’s not so painful as it was, so I will take that. I have been through too many operations to be worried about what my knees look like. If they couldn’t have done the knee, they’d have had to chop my leg off I think, above the knee. That would be the only option. So, anything to do with being mobile and out of pain was a bonus for me. (Neville)
5. I am not the person I used to be
This theme explored how participants grappled with their own personal and social identity, whilst living with a troublesome knee and after undergoing revision knee replacement. Several participants expressed they found it “really difficult seeing others have successful knee replacements”. Some felt they were no longer able to be the person they were prior to surgery and grieved this loss.
I’ve got high expectations of life. I’ve obviously had to revise them as I know I’m never going to ski again and I know I’m never going to run again. I was always so active, that was a huge part of my life, and my family’s life. (Rory)
Participants also spoke about impacts on social identity, including the experience putting “a huge strain on family relationships” and social exclusion because of their knee condition: “people definitely stopped inviting us to things because I was so limited by me knee”.
I felt a bit of a twit saying sorry it’s my knee. I’m so sad that I haven’t been able to do as much as I would normally have done, because of the knee – this is the first time that anything has really interrupted the things that I had on my plate. (Gwen)
Some participants reflected that they were “disappointed in myself, that this all went wrong” or that they were “frustrated at my body for letting this happen”.
The regret is I just wish I’d have bit the bullet and gone back to the surgeon and had the knee re-done, which it needed doing, in the first place. But there you go. I always feel it’s a bit self-inflicted and being quite healthy at the moment and fit, it annoys you that you can’t do everything you want to do, even now. (Neville)
6. Lingering uncertainty
This theme explores the ongoing uncertainty continuing long after surgery. Participants felt that the experience has “really shaken my confidence in everything” and that the threat of something going wrong again “is always in the back of your mind”.
I still feel frustrated by my knee. I’m seven months since the last operation, so, you know, I’m slightly frustrated that it’s still giving me problems, but I’m grateful I’m able to work. I think with everything I have been through that I just want to know that it is improving, even very slowly. Because you worry that it might go wrong again, that hangs over you for sure. (Rory)
I don’t feel completely confident on it. I do worry that it will let me down again. I think the strength’s getting better. I get the impression the bending is never gonna get much more, but I can live with that. I do get some hip pain and I think “here we go again”, but it seems to settle with rest, for now anyway. (Gayle)
Reflecting on the experience, some participants expressed “a niggling feeling of how unfair it is that this happened to me”, while others expressed a desire to “put it behind me and get on with life as much as I can”.
Nobody has done anything wrong, it has just been a bummer really, it’s just one of those things. And it happens rarely, it’s just I would rather it happen rarely to somebody else rather than me. (Bob)