Theme 1: Patients prefer active safety netting strategies
Patients preferred safety netting that included advice and actions that actively promoted re-consultation or involved pro-active follow-up.
[I appreciated the] information in the initial conversation with the receptionist, and the prompt contact from the doctor. And the advice, and him wanting to know, in a few days how I was feeling, was anything getting any worse, any more symptoms. (Patient 20, female, 57, telephone interview).
Active safety netting as part of a thorough and logical approach to managing their lung cancer-relevant symptoms allowed patients to understand the diagnostic strategy, in turn making the safety netting advice easier to understand. For example, in the example presented in Box 1 both the patient and GP describe the ‘logical’ steps the GP took to reach the diagnosis over several visits. In his first interview the patient described how the GP had addressed each of his concerns through a series of logical steps, in his second interview he reflected on how this approach had been reassuring.
Box 1: Thoroughness in consultation (Patient 4 and GP 2)
Patient 4, male 47 years old
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GP2, female
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Most important thing was she was able to listen. She listened to me when I said my symptoms were and then she talked me through, saying, “I’ve listened to your chest at the front. Your chest is clear. There’s nothing to see in your throat. Your nose is not blocked. So, let’s get these tests done.” So, the first consultation, “Let’s do these tests and make sure everything’s alright, blah, blah, blah.” Everything that I said she was able to check it and say, “This is this, this is this, this is this.” Then okay, if it wasn’t showing up as a regular cold and she couldn’t identify a virus as yet, ‘’let’s do these tests to make sure it’s nothing else.’’ She also spoke to somebody on the ''phone, not within the practice, but I think it was at [hospital] and confirmed things. So, it felt like everything she was doing was logical and that was…yeah, I was reassured. Especially when the tests came back and there was nothing untoward, so that was a relief.
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I think at the beginning he came in; he’d had a cough; I think he’d had some recent travel and I thought it was a chest infection hence we went for the antibiotic route. I think he then saw one of my colleagues, had a similar story, treatment and then it was this persistent cough at which point I was thinking oh what’s going on. Is this something else or is it just an allergic cough? I think that’s why I gave the steroids. I’m relieved to know that I’m true because I couldn’t …he was otherwise okay. He hadn’t lost weight; he hadn’t lost his appetite. He was otherwise stable, and I don’t think he’s a smoker, so I couldn’t. He was quite an unclear one because I couldn’t. From a cancer side yes, you’d be thinking he’s got a persistent cough and I think I did request a chest X-ray as well. So that was my cover but […] I think he was worried, and he was suffering more than anything. I don’t know, but I think it was more that he was getting frustrated that his cough wasn’t settling. I’m not sure we had any magic cures for it and that’s why he was coming back.
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Several patients commented that their telephone consultation was with a GP they had not met before, who had not read their notes and was unaware of their history. They were dissatisfied with the level of thoroughness in the consultation, were not sure that all possible diagnoses had been considered, and felt ‘unsafe’ as a result.
If I get on the phone and talk to a GP, and they work through my symptomology, I discuss some of my background, what's been happening with me, get some historical data, and to then come to a conclusion in terms of a prognosis. Had that been done, in that kind of environment, I suppose, I would have thought "You know what, they've taken the time to research what's going on with, happen with me historically”. (Patient 14, male, 50, telephone interview)
Patients who had attended a telephone consultation during the COVID-19 pandemic, where the focus was perhaps mostly on acute symptoms and/or ruling out COVID-19, found it difficult to remember everything they wanted to discuss with the GP without a thorough discussion of wider issues.
GPs reported that they used active safety netting with certain patients, but not others, particularly when their “level of worry is a bit higher” (GP 3). Two GPs were concerned that active safety netting could worry patients unnecessarily.
A lot of what we do in general practice is actually reassure the worried well and a lot of discussions about cancer safety netting is actually just doing the exact opposite. (GP 1, male).
GP 3 believed that explicitly naming red flag symptoms could raise anxiety among patients at very low risk of cancer.
Once you explain the list of things to look out for that people start getting them more often. […] I don't think it's enough of a negative not to do it. But certainly, there are a few patients where almost anything, if you'd asked them about it, they'd, manage to find an example of it. (GP3, female).
This suggests that GPs have particular concerns about specific safety netting devices, including highlighting red flag symptoms, for fear of generating anxiety, although this was not reported in our patient interviews. Patients engaged with diagnostic uncertainty and management as part of a thorough and attentive consultation, especially when active steps were taken to promote re-consultation.
Theme 2: Patients respond poorly to passive safety netting strategies
Patients interpreted passive safety netting (verbal instructions to come/call back if symptoms do not resolve) as dismissive, and a sign that the GP was uninterested in their problem. This was a particularly salient experience for patients who had a telephone consultation. For example, Patient 13 had a telephone consultation during the pandemic, and inferred that the GP was not “that interested”, despite their assurances that she should get in contact if her symptoms persisted:
I think I had the cough and the fatigue for about a week. And so that's when I rang up the doctor, and the doctor weren't really that interested. Told me to ring back if I got any worse. He was more concerned about my chest, but my chest was fine. I think he was going on the lines of this virus rather than anything else…yeah. Get in contact if it gets worse, or if it is serious phone the NHS, that was it! I felt a bit daft when I've come off the phone […] I wasn't offered anything. Not at all. (Patient 13, female, 48, telephone interview)
Some patients experienced feelings of shame following passive safety netting, and felt dismissed particularly when access to a blood test was restricted. These patients did not receive specific advice on how to deal with COVID-related disruptions to additional tests they may need.
And so, there is nothing they suggest 'Oh, call me back at such and such at a later time and we'll check it. Obviously, the problems is right now I can't go and get a blood test. So, I guess that's made it problematic. Or a follow-up appointment. […] Yeah, it did feel rushed. This is what you're getting, and see you later. (Patient 10, female, 40, telephone interview)
GPs justified passive safety netting in consideration/management of cancer risk, particularly in face to face consultations where they felt more confident about their appraisal of the patient’s likelihood of cancer.
Theme 3: Patients don’t always know about diagnostic strategy, either because they don’t understand it or where GP hasn’t told them everything
GPs described diagnostic strategies predominantly in relation to managing cancer risk, including some strategies not communicated to patients, such as heuristics about patient’s characteristics (e.g. age), and future plans in the event that symptoms persisted. When patients were unaware or had not understood the GPs ‘logic’ or diagnostic strategy, there was often a feeling of concern or lack of resolution. Box 2 presents an example of misalignment between patient and GP, where the patient was unaware that the GP was ruling out anaemia [to exclude cancer] and did not feel reassured by blood tests and an x-ray as a diagnostic management strategy. She was, however, reassured following an MRI scan, which she felt was the only way to properly rule out cancer.
Box 2: Diagnostic strategy did not reassure patient (Patient 1 and GP 2)
Patient 1 (female, 62 years old)
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GP 2 (female)
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But he said there is nothing seriously going on, it’s just your nerve endings are a bit, sort of, getting old, I suppose, and we all get aches and pains as we age. So, I’m happy with that, because at least I know they’ve had a good look inside me, to out-rule if it was cancer or anything else, which I was worried about.
[Interviewer] so did you ever discuss with the GP that you were concerned about that it might be cancer?
I did, yes, speak to the GP about it and, when I said I do belong to [private health insurance firm], so she wrote a referral letter […] I suggested, myself, please may I have an MRI scan, because X-rays can only pick up so many things, where an MRI can up a lot more, and a lot more detailed. So, yeah, I’m very glad I had it done; very glad.
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I did, so when I requested the bloods, I requested a bone profile as well and full blood count to make sure there was no anaemia. So yes, I did. But I didn’t feel, based on her history, that was likely to be cancer. I did the tests to make sure we weren’t missing it, but because she was otherwise well it didn’t fit with myeloma or anything like that. I still did all the investigations.
[…] Yes, I think the fact that she was running a business and she looks after the grandchildren and she’s standing a lot all made me think well this is most likely getting to be mechanical back pain rather than something more sinister. So, I guess from the history what I was gathering was pointing me toward benign
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Similarly, Patient 2 was not aware of the diagnostic management strategy that GP 1 was using to resolve her cough (Box 3). She was concerned that the GP did not appear aware of her medical history of whooping cough and silent reflux, and was not aware of the GP’s strategy in using a ‘trial-of’-treatment’ approach (silent reflux) as well as waiting for potential parapertussis symptoms to resolve. The GP, on the other hand, thought that he had clarified this, and that they were working to an 8-week timeframe for re-consultation. In her second interview the patient reflected on her experience and explained that she felt that the GP had most likely reached the correct diagnosis, but that the diagnostic approach and next steps had been unclear to her throughout.
Box 3: Misunderstanding diagnostic strategy (Patient 2 and GP 1)
Patient 2 (female, 58 years old)
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GP 1 (male)
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How are you feeling at the moment about the diagnosis?
R: I’m a bit confused how they are linked. Whether it is two separate conditions or…Some of the symptoms are…are similar. Yeah.
Do you feel that the consultation, at the end, was it clearly linked to an action? Did you understand what was going to happen next?
R: Not really, because there was no suggestions for what I could do in the next sort of three or four weeks which would take me up to the end of the three-month period other than increasing the medication for the reflux, but not really anything about the whooping cough.
So, it wasn’t clear to you what you should do if anything changed?
R: If I needed to rest or if I needed to drink different amounts. If maybe he’d known a little bit more about the acid reflux and other symptoms. That must’ve been somewhere back on my records because I went through quite a lot of testing and they found that I had a hernia, and nothing was sinister then. So, it’s just at the back of my mind. As he said, I can’t be absolutely certain. I know they do normally say that.
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So, there are viruses called parapertussis viruses that are very like whooping cough viruses that are continually circulating in the community and they frequently, not infrequently, can cause persistent coughs with paroxysms of coughs where you cough, cough, cough and can´t stop yourself coughing and they last ages. They last sort of three months and so with her I think with an eight-week history that was paroxysm and to me it was probably that or it´s silent reflux, so I've given her treatment for silent reflux and I'll see her again. To be honest if it´s parapertussis it would have cleared up by the time I see her again anyway so if it´s cleared up I'll just stop the PPI. If it´s not cleared up I'm guessing I'm probably going to be looking to refer her, probably just a respiratory referral.
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These findings indicate that safety netting is dependent on patient understanding of the diagnostic process in addition to comprehension of specific signs, symptoms and timeframes that should trigger later actions.