Background
Methods
Study population
Data collection
Data analysis
Results
Patients (n = 13) | ||||
Age; mean (range) | 64 (53–77) | |||
Sex; n | ||||
Female | 5 | |||
Male | 8 | |||
Non-binary | 0 | |||
Graduation; n | ||||
Secondary school / Vocational training | 9 | |||
University degree | 4 | |||
Occupational status; n | ||||
Full-time employed | 4 | |||
Part-time employed | 1 | |||
Retired | 8 | |||
Membership in a self-help group; n | 0 | |||
Years from diagnosis to first surgery/ planned surgerya; mean (range) | 8 (1–17) | |||
Office-based orthopaedists, GPs (n = 7) | Orthopaedists in clinics (n = 3) | Anaesthetists (n = 4) | Total (n = 14) | |
Age; mean (range) | 57 (40–67) | 32 (29–36) | 33 (29–40) | 45 (29–67) |
Sex; n | ||||
Female | 3 | 1 | 2 | 6 |
Male | 4 | 2 | 2 | 8 |
Non-binary | 0 | 0 | 0 | 0 |
Medical specialist training; n | 7 | 0 | 1 | 8 |
Years of work experience; mean (range) | 27 (4–40) | 3 (2–6) | 5 (1–10 | 16 (1–40) |
Contact with patients with knee osteoarthritis on average per week; mean, (range) | 13 (3–30) | 8 (4–15) | 2 (1–3) | 9 (1–30) |
Continuing education; n | ||||
Evidence-based medicine | 3 | 0 | 0 | 3 |
Shared decision-making | 1 | 0 | 1 | 2 |
Information needs and information provision
Information needs and their influencing factors
Disease pattern and treatment | Total knee arthroplasty | Anaesthesia |
---|---|---|
Clinical picture of knee osteoarthritis Treatment options for knee osteoarthritis Treatment / Dealing with limitations in activities of daily living | Organisation and technical process Organisational procedure Operating orthopaedist Surgical procedures Rehabilitation Complications and risks General risks and frequency of complications Frequency of failure to improve symptoms after surgery Time until revision surgery is necessary Course after surgery Expected restrictions in everyday and leisure activities Expected pain intensity Prehabilitation | Anaesthetic procedures Possible anaesthetic procedures Sedation under spinal anaesthesia Complications and risks General risks and complications Information on individually experienced complications in the past Course after anaesthesia Expected restrictions Pain therapy |
“To be quite honest, if the doctor says to me „We have to do such-and-such”, then I don’t need any [more] information.” [009, Patient with planned TKA]
“So a TKA. Yes, and everything else didn’t really matter for me, actually I didn’t need any information because, as I said, I had made my decision.” [015, Patient with TKA]
“Yes, they’d explained about the risks. I’ll tackle it this way, quite simply, by every operation something can go wrong. I’ve actually finished with it and filed it away, so to speak. He’d already said a bit about thrombosis etc. But to go into more detail, I don’t give it another thought.” [017, Patient with planned TKA]
“Yes, of course you expect to get a lot of information. Personally, you have your own sensitive issues. In my case, it’s a previous anaesthetic where I temporarily lost my short-term memory afterwards. That’s not something you want again, I wanted to avoid that [019, Patient with TKA]
“Yes, they explained everything. Everything. Some things I didn’t want to know. Where I just say I trust them.” [017, Patient with planned TKA]
“[…] The more you know, the more uncertain you get. That’s how I see it. Right? Maybe there are a few things you don’t want to hear, where I just say, no, I’ll ask what I would like to know, not what I ought to know.” [017, Patient with planned TKA]
Information provided by doctors and unmet information needs
“I was shocked then. Because I’d thought that something else can happen before the operation. But either the doctor intended to do an operation or they just had time, or whatever, that was my impression, that they wanted to get through it as quickly as possible. And, basically, make me make another appointment right away. Then I didn’t do that. And then this remark came: “We’ll certainly see each other soon.”” [010, Patient who refused TKA]
1 Information needs and information provision | |
1.2 Information provided by doctors and unmet information needs | |
1a | “[The informed consent process] I find it still very important [for decision-making] because beforehand the surgery is usually only outlined so that the patient knows that it’s not a small matter […]. When patients come to me for the informed consent process, most of them are already so resolved that my explanation doesn’t change the opinion any more, nevertheless I have experienced one or two who say Oh, it’s a lot more [Risks] than I thought […]. “ [022, orthopaedist in hospital] |
1.3 Benefit and harm communication | |
1b | “Whereby he [explained] the disadvantages quite clearly or that I shouldn’t expect too much. It is optimal if it is fitted correctly and one is pain-free but still has limitations.” [020, Patient with planned TKA] “And the fact too that the function of an artificial knee joint cannot be as good as an original joint. That it must also retain certain functional deficits and first and foremost a knee prosthesis is done because of the pain situation and to improve the quality of life. But that in the end functional deficits will remain.” [005, office-based orthopaedist] |
1c | “But ultimately one has also to explain to the patient that luckily that very rarely occurs and that simply every intervention has complications and that there just has to be a legal safeguard for us somewhere.” [022, orthopaedist in hospital] |
1d | “I’m just saying that it happens relatively frequently or that it happens very, very seldomly or seldomly. Well, I don’t express it in figures or try to demonstrate it even more [013, Anaesthetist] “I also explain about the risk of infection, that this is very seldom and here it is in the region between 2 and at the most 5 percent, so that they feel a bit more, well, just a little bit safer.” [022, orthopaedist in hospital] “And then I set it in relation to everyday life, road traffic, household, what can happen to you there, so they then have an idea what it means because I know now that a hip replacement carries a risk of 1:350,000 of older people getting a spinal hematoma. But the risk of an accident on the road in everyday life is greater, then they have an idea and are able to place it. […].” [024, Anaesthetist] |
1e | “[…] If you can illustrate it somehow, you could say that happens here once in ten thousand times and this is a picture where you can see how much one in ten thousand is. Then, I think, it would certainly be reassuring for a few of the patients.” [013, Anaesthetist] |
Benefit and harm communication
“[In the informed consent process risks] were mentioned, but not particularly emphasized, right? So the emphasis was clearly to state [it is] to over 95 percent completely low-risk.” [006, Patient with TKA]
“And if patients have really not addressed it at all, then, of course things such as infections will be addressed, how high the chances are, general risks like a pulmonary embolism that can involve life-threatening complications that that/yes, some patients are then likely to be, how shall I put it, “shocked” about everything that might happen. Yes. I try to put it in the correct perspective, what complications are frequent and what are very rare.” [018, orthopaedist in the hospital]
“Only very few patients really want numerical frequencies. Because that is for many not very easy to place, I think. But if I use words like one in a hundred patients, one in a thousand people, just something simple, that is relatively easy for people to visualize.” [014, Anaesthetist]
Subjective disease theory of knee osteoarthritis
“[It was stated that it was an] incipient arthrosis. And I’ll have to live with it for the time being.” [010, Patient who refused TKA]
“But [the office-based orthopaedist] said too, there is no alternative for me, didn’t he? Well, now in fear that I belong to these 20 percent where there are still problems, perhaps of a different type or a different pain, he said one way or another I must get a new knee sometime. Right? And it remained for me to think about it, now already or wait another five years?” [011, Patient with planned TKA]
2. Subjective disease theory of knee osteoarthritis | |
2a | “The information I was given that it is, for example, not reparable. It can’t be reversed. That’s the way it is. And it will stay like that, won’t it?” [015, Patient with TKA] |
2b | “Actually, I had expected to be offered other alternatives. But, really, it was only about operation or no operation? That shocked me a little. And then I said: “No, not so fast.” First, a second opinion, so I went to my family doctor. [010, Patient who refused TKA] |
Treatment course before the decision for TKA
“[Physiotherapy] was offered, wasn’t it? And, as I said, I tried to ignore it and carried on with my daily work […]. Well, really I blocked it out for myself.” [017, Patient with planned TKA]
“But as I said, the [magnetic field] didn’t help much, I found […]. Yes, and then I put the whole matter, yes how shall I put it, I put it ad acta for the time being and just carried on like before.” [015, Patient with TKA]“I had the bandage and the shoe inserts and tried it with that […]. Then physiotherapy came in addition. And then [I still have it] I tried microfracturing.” [020, Patient with planned TKA]
Decision-making processes for TKA
Triggering factors for the decision for/against TKA
4. Decision-making processes for TKA | |
4.1 Triggering factors for the decision for/against TKA | |
4a | “And I must say, especially there in the clinic, these doctors, they seem so superior […], keep suggesting alternatives and radiate such confidence that you can’t do anything else.” [009, Patient with planned TKA] “Oh, the decision was actually made when he said to me I should definitely get my knee operated. That was the final push. […]“ [025, Patient with TKA] |
4b | “And then I thought about it and had already read a lot in Internet about how satisfied, let’s say, nearly all of them were with a new knee. […] And now I’ve thought again if I get the chance, the knee could last till the end of life, why should I still wait and keep on dragging myself around here?” [011, Patient with planned TKA] |
4c | “[That was, let’s say] two years before the operation now. Because the thought that that this would happen to me was already clearly present. Only, at that time, the psychological strain was not so great so then I said: “Okay, with the information I have, I’ll wait a bit.” [006, Patient with TKA] “Well, for me it’s now an issue where I simply say, I can’t go on any longer. After that, I just got this information from the clinic, so to speak […]” [017, Patient with planned TKA] |
4d | “At the moment, what with the Corona situation and everything, I don’t think about anything like that.” [010, Patient who refused TKA] |
4e | “And now it was 50:50 whether I have an arthroscopy or a new knee directly. Then I decided on the arthroscopy because last time that worked quite well.” [025, Patient with TKA] “I: Did you have a talk with the orthopaedist who gave you the diagnosis, about the operation again? B: No, I/ we had agreed that if the magnet thing didn’t work, I’d go [to the clinic consultation for TKA].” [009, Patient with planned TKA] |
4f | “[From the knee arthroplasty I expect] full mobility again […] and of course pain-free.” [025, Patient with TKA] “Yes. That I’d be able to do everything I could do before. But that the healing process, as they say, is part of it […] Yes, that I could lead an adequate life, possibly without painkillers. We’ll have to see […]” [017, Patient with planned TKA] |
4 g | “And then he added that, in theory, it’s quite possible that I would be able to keep this knee joint up to the end, if everything goes normally. And then that was the last reason, where I say, yes, there’s now no other reason to wait.” [011, Patient with planned TKA] |
4.2 Decision-making on TKA | |
4 h | “The doctor looked at the documents, looked at it all. No, we’re not doing an arthroscopy, you can come tomorrow, then you’ll get a new knee. Yes, and that was where I just thought, no, not so fast now. It was more like a sort of battering-ram method and then I thought, no, I don’t want that. In the praxis where I was afterwards […] the doctor took much more time.” [025, Patient with TKA] |
4i | “I hope that my influence is not quite unimportant in the decision-making about when a knee operation should or should not be performed. […] I try to explain what I consider is the right way for the patient, and hope he follows this.” [004, Office-based orthopaedist] |
4j | “[How such an operation is performed] I didn’t actually know. That’s right. Well, I didn’t look for information about how such a knee operation is performed.” [015, Patient with TKA] |
4.3 Persons involved in the decision-making process | |
4 k | “Well, basically, when such crucial or serious decisions are coming up, we do sometimes support each other. In the time before Corona, there was no question about this.” [020, Patient with planned TKA] |
4 k | “Well, of course, I talked about it with my wife but in the end, it was my decision, wasn’t it?” [006, Patient with TKA] |
Decision-making on TKA
“I went to my orthopaedist and told him it’s all getting very strenuous and very difficult. I think it is now time for me to do something. […] And now that’s been confirmed to me here in hospital. […]” [019, Patient with TKA]
“Oh, the decision was actually made when he said to me I ought to have a knee operation in any case. That was the final push because otherwise I would get even more problems with my back and, as I said, that was the final push.” [025, Patient with TKA]
“Well, when I went there and said: „I’m in pain”, I was given a prescription for a packet of 100 painkillers. “Do you want a prescription for your knee for massage or something?”, and so on. But in the end, I didn’t feel quite good about it because I thought I need someone who says quite clearly: “Come on, there’s no point any longer, it’s got to go under the knife.” [012, Patient with planned TKA]
“Well, I do try to take care that I don’t tell every patient: “Yes, you’ll benefit from a prosthesis”, but I really say that, yes, there are things that indicate a contradiction, for example. For instance, the patient is young, or the conservative treatment methods have not been exhausted. Yes, I always try in any case to talk to the patient about such matters. […]” [018, orthopaedist in the hospital]
„Well, of course always according to what I think, how sensible and how important it is to get a TKA done. […] Some people also have to be pushed towards their good fortune, so to speak.” [003, Office-based orthopaedist]
Persons involved in the decision-making process
“Well, it was my decision, obviously, you hear from your acquaintances: „He’s got new knees, has a new hip”, or something. But I didn’t let myself be influenced by that, I just say every person is different in their anatomy. Something can always come up. And my decision is definite […].” [017, Patient with planned TKA]
Decision-making processes related to anaesthesia
5. Decision-making processes related to anaesthesia | |
5a | “I didn’t want spinal anaesthesia. Because I had it years ago when I broke my foot. And I was stupid enough to let them give me spinal anaesthesia. And it was very unpleasant for me. I had that at the back of my head and then I didn’t want that. I knew a bit about general anaesthesia. […] So it was actually clear that I wanted a general anaesthetic, wasn’t it? [–-] My decision was final.” [015, Patient with TKA] |
5b | „I was afraid [about a spinal anaesthetic]. […] I know of cases where there were complications. A lumbar puncture was done on my daughter and everything happened that I didn’t want to happen. Our neighbour had permanent damage from it when she was young and, well, I simply have these experiences. And that’s why I thought, if I can rule that out, I can put a big tick on it, which comforts me.” [020, Patient with planned TKA] |
Role of the informed consent process and informed consent form in the decision-making process
“The decision was final. Nothing changed about that [due to the informed consent process].” [006, Patient with TKA]
“I find that goes a little in the direction that the informed consent process also has significance for the decision.” [018, orthopaedist in the hospital]
“I just run through the informed consent form, don’t I? The risks are quasi on it. So I use it as a guideline.” [013, Anaesthetist]“Yes. You look through it, you see the pictures about what will roughly be done and so on, you read it through. But that is really just a documentation in my mind, isn’t it? Well/ You inform yourself, but as I said, in hindsight it has to be done anyway.” [015, Patient with TKA]
Information acquisition and sources of information
“No, I didn’t inform myself beforehand. Not at all. I let it all, shall we say, pass over me. As I said, if you have confidence in someone, I think, and he knows what he’s doing, then I don’t need any further information.” [015, Patient with TKA]“I’m just a person who hungers after knowledge. […] If I’ve got something [wrong with me], I’d like to know exactly what’s going on and search on the internet or of course I ask the doctors about it. And yes, I just simply want to know what’s going on.” [025, Patient with TKA]
“[…] The […] doctors’ statements were partly: “We can’t do anything apart from an operation.” So I tried myself, not to cure it, but tried to get information and to find a solution.” [010, Patient who refused TKA]
Barriers and facilitators for evidence-based informed consent forms
Barriers | Facilitating factors |
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• Decisions were made before the informed consent process without having the information contained in the consent form • Doctors assume that patients are afraid of the frequency of complications, or that it is not relevant for the patients • Patients have a reduced need for information | • Hospital doctors request quantitative visualisations for risk communication • Hospital doctors want better informed patients |