GP referral to rapid diagnostic centres for non-specific cancer symptoms: a qualitative study

Cancer as an ever-present possibility, yet hard to diagnose

The first theme set the context for the study from the perspective of our GP responders. It highlights that the possibility of cancer appeared to occupy GPs’ thoughts and they were mindful of the prospect of missed or late diagnoses:

‘With every consultation I try and have just that little mental check list of the "what ifs". What if it could be cancer, what do I have to ask about that might indicate a serious disease here?’ (GP13)

GPs experienced uncertainty in determining when symptoms might be owing to cancer, with patient symptoms, primary care practice, and patient-related factors all challenging diagnosis. Diagnostic challenges were particularly acute when patients had non-specific symptoms, which could be attributable to multiple causes (including other physical and mental health conditions, ageing, and frailty), and sometimes concerns could be signalled by ‘gut feelings‘:

‘Sometimes there’s not much else to go on other than this person just looks like they’re really failing and we don’t really know why.’ (GP11)

In such circumstances it was unclear whether symptoms were indicative of cancer, which organs were affected, and which referral pathways should be followed, while being aware that ’you don’t want to refer everyone’ (GP01), risking overwhelming cancer diagnostic pathways.

Challenges in respect of current primary care practice were identified. Patient continuity was considered to facilitate observation of changes and concerning signs, and enabling patients to feel comfortable raising concerns. However, a loss of continuity was reported in some practices:

‘If you’ve got the continuity, you can go — I know what’s going on, I know you, or I know your family history … I know what’s normal for them. But that’s increasingly gone out of the window. And that is a major issue for picking up cancer where there’s not obvious red flags.’ (GP08)

Recent changes in primary care, including increasing remote consultations, reliance on other professionals, such as advanced care practitioners, to conduct some examinations, as well as insufficient time to take and review complex histories, were all felt to further confound cancer diagnosis. Patients were reported to attend with multiple symptoms and delayed presentations, attributed to increasing challenges getting appointments, patient stoicism, and not wanting to bother the GP. This resulted in GPs having to interpret multiple symptoms and increased risks of late diagnosis.

The journey to diagnosis: the role of the RDC pathway in supporting GP decision making when cancer is suspected

Eleven participants had used the ICE button at least once. They reported that it facilitated the process of ordering tests and was a useful aide memoire, reminding them of the required tests, and prompting them to think more widely about patient symptoms.

GPs used the ICE button in a range of circumstances including the following: in response to concerning patient symptoms, with weight loss frequently reported; a troubling patient or family history, especially a history of cancer or smoking; when they had a strong suspicion of cancer, but the site was unclear; when they could not find an explanation for symptoms or identify the source; and, on occasion, in response to patient anxiety and to reassure.

There was some frustration about the requirement for recent test results, which could necessitate repeat testing:

‘It can sometimes take a little bit of time to work them up and decide what you’re going to do … you could start by doing some blood tests and then you could maybe see them a couple of weeks later … And it could be a couple more weeks before you decide to do that referral at which point the tests have expired … so you have to then redo all of the tests, which sets you back further.’ (GP02)

This might be a disincentive to watch and wait, or put a limit on how long GPs are prepared to do so, to ensure the initial tests can be used.

Test results influenced GP decisions. Onward referral to the RDC was undertaken when patients had negative test results coupled with ongoing symptoms, GP concern, and/or a cancer history, or when test results did not meet thresholds for other pathways:

‘All the investigations were okay, but the patient was losing weight drastically …. there wasn’t anything to suggest the cause … after having done the routine investigation in the practice, because I wouldn’t know whether to go through the respiratory pathway or the colorectal pathway … plus there was no other history apart from the weight loss and their worry about that. So I did the RDC.’ (GP10)

However, negative results, coupled with relatively low-level concerns, could reassure GPs that further referral was not required, or that they could watch and wait:

‘If it’s a patient where there was a suspicion of something, but not really a massive concern … they are reassured, and they feel better. And we sometimes say, look the investigations have actually not shown anything, but we know that there’s a lot of things it’s not.’ (GP03)

Positive test results could indicate alternative referral routes were required, diverting patients from the RDC pathway, highlighting the role of the tests in signposting to optimal pathways:

‘The FIT test result came back and it was positive which we weren’t necessarily expecting … We ended up using the lower GI Two Week Wait Pathway instead. So even though we’d done the full RDC ICE proforma we ended up changing tack with the results.’ (GP12)

In other instances, positive results indicated problems that could be managed within primary care, with watch and wait or no further referral indicated. GPs also reported not referring for further investigations if symptoms resolved, or it was considered that patients would not benefit from further investigation, for example, if very frail.

The process of referral was reportedly easy and ’straightforward’. Unlike other 2-week wait (2WW) pathways, a GP narrative was required. One GP noted that this made referral more onerous, especially if required to collate information from consultations with multiple GPs. However, others appreciated the opportunity to articulate their concerns and appeared to feel this lent legitimacy to their insights:

‘Sometimes it is just a gut feeling, you know something’s not right but you can’t put your finger on it … There is a free text bit so that you can actually write exactly … what the story is and what your concerns are … It gives you an opportunity to give some context as well as the objective [test results].’ (GP12)

Participants were asked about the outcomes of RDC investigations, although not all were known at the time of interview. Cancer diagnoses were seldom mentioned: instead other diagnoses were reported, including serious and hard-to-diagnose conditions. This was found helpful, and non-cancer diagnoses were reportedly a relief to patients and GPs alike, giving space to focus on treatment or alternative management strategies without a background anxiety about potential cancer or missed diagnosis:

‘The answer could be [they’ve] lost [significant] weight and actually it’s because [they are] really struggling with anxiety at the moment and that’s the main issue. So the clinic isn’t going to fix that … but it’s going to allow me as a clinician to then say "phew I’m not dealing with cancer or anything serious, I can now do some serious work with [their] mental health and try and get … some help on that domain".’ (GP06)

The reassurance of an alternative pathway: the role of the RDC in supporting GPs and patients

The RDC provided a welcome referral pathway when GPs were concerned about patient symptoms, but they did not meet the criteria for other pathways or it was not clear which was most appropriate:

‘Sometimes we’re stuck in this middle ground of — well they don’t fit this box and they don’t fit this one and they don’t fit that one. But I’m stuck now and I have nowhere to go with them.’ (GP11)

In common with other areas,^15,16 the colorectal 2WW pathway had been amended requiring a positive FIT. GP views about this changed requirement varied, with mixed views about the robustness of the evidence base and risks of missed cancers. However, the RDC gave GPs an alternative referral pathway when results were FIT negative, but they were concerned about possible cancer. The continued access to a rapid referral pathway afforded by the RDC may have helped allay GP misgivings and increased the acceptability of this change for some.

GPs considered the RDC provided faster access to testing, which could expedite diagnosis and treatment, as well as access to expert medical opinion and full assessment of patient symptoms. The relatively open referral criteria could also reduce the need to ‘game the system‘ so that patients about whom GPs are concerned are seen within cancer-specific pathways:

‘I wish I’d had it for [previous patient] … I spent hours agonising … I knew they needed a two-week wait … I really fudged the numbers to get them into that [pathway]. And the RDC would have been perfect.’ (GP05)

The pathway afforded reassurance to GPs; for example, a newly qualified GP conceptualised the RDC as a ’refuge’, offering support in the context of potentially overwhelming diagnostic uncertainty:

‘It’s very wonderful to know that you have at your back as a clinician working with doubt … you actually come across a lot of uncertainty. So sometimes those uncertainties can be way too much … and gut instinct is saying something is going wrong. So I think I see RDC as a refuge.’ (GP10)

While GPs primarily reported positive experiences, some also highlighted concerns and risks. Some expressed concerns that the availability of the pathway might stifle GPs’ diagnostic skills and confidence, providing them with ’an easy get out place for handing over that responsibility to somebody else’ (GP05), perceiving it as ’lazy’ and a ’tick-box exercise’ (GP09). This was a disincentive to use the pathway for one GP. Risks of over-referral, overwhelming the clinic, and disadvantaging those about whom there is greatest concern were also identified.

GP knowledge and awareness of the RDC pathway

While most participants had received information about the RDC, others did not appear to have received timely information. One was unaware of the RDC and had consequently never used the ICE button or referred to the RDC, although they considered ’it would be transformative’ (GP08). Another had used the pathway but had not initially known about the ICE button:

‘I actually don’t think I realised it was there for quite a while of doing the referrals, I was just doing the panel of bloods from my own head.’ (GP01)

Some noted they were not aware of what happened to patients at the clinics, apart from a general awareness they were likely to have scans, and there were apparent difficulties for some in keeping abreast of pathway changes.

GPs perceive positive impacts for patients, but some barriers to attendance were highlighted

Participants were confident that patients would attend the RDC, perceiving patients presenting with non-specific symptoms were concerned about their health and symptoms, and motivated to undergo further testing:

‘Usually you’re not fighting for these people to go get seen. They are people who want answers and are worried about their vague symptoms, and they are willing to take more steps to get this sorted.’ (GP03)

However, travel was identified as a barrier for some, and could be especially acute in some rural areas. While some patients were felt to accept this as an aspect of rural life they were accustomed to managing, for others distance presented challenges associated with the costs and time required to travel, lack of access to own transport, coupled with limited public transport. Travel therefore represented:

‘One of the biggest issues, even to the point where it makes the decision for some people as to whether they actually want to be referred … that’s often something they worry about more than the referral itself sometimes.’ (GP12)

Time burdens were associated with travel, time spent at clinic, and at future appointments for further tests or treatment if required. A recent relocation of scan appointments from the city to an outlying town was felt to present difficulties both for rural patients, who would have more difficult journeys, and city-based patients, who hitherto appeared to have experienced fewer travel barriers than their rural and coastal counterparts.

The research did not encompass patients’ perspectives. However, GPs perceived that patients welcomed the RDC referral, appreciating their concerns being taken seriously and actions being undertaken to investigate and resolve their concerns. As patients were often felt to be anxious about their symptoms, they appeared to value the speed at which appointments were arranged, which was perceived as providing a relatively short timeframe for managing anxiety; and non-cancer diagnoses could provide relief and reassurance.

‘I rang him up and …“Oh, I’ve been told there’s no cancer and that.” So he was just happy … just happy to know that … there’s probably a hundred, thousands of other words said but the bit that really mattered to him was that.’ (GP11)