Perceived factors affecting delays in diagnosis of cancer
| Themes | Subthemes | Representative quotations |
|---|---|---|
| Nature of primary care | Limited cancer training | “The biggest problem is that most doctors, both specialists and general practitioners, have no oncology training and the oncology training that they have is directed mostly to classroom work on the very detailed idiosyncrasies of cancers so the genetics, the parts of it that people really won’t have to use as GPs because they’re not specialists. Most docs have no idea how to diagnose cancer, and they really don’t know what to do with it when they get it. Some of the cancers are getting better. Bowel cancers are getting more publicity, prostate maybe but by and large, it’s really now a dog’s breakfast as to what you know and how you manage it so they essentially turf it to the oncology world […]. From a GP point of view, the biggest barrier is an understanding of the disease itself and that’s an education thing.” [FP-7] |
| Generalists and information overload | “It depends on the family doc, but you have to realize that a lot of family docs may only see one cancer in their practice, in their life, in their career […]. I see cancer 24/7, right? You sort of think it’s everywhere, but it’s not.” [SP-10] “[Things are getting more complex] and there are more different tests we have to do and more drugs. You know, when I was a lad, there were four different drugs to treat diabetes. It’s just massive the numbers now and you’ve got to know all about those.” [FP-6] | |
| Initial presentation | Poor continuity of care | “Lack of having a dedicated family doctor is a problem. Certainly, we see big delays in people that go from walk-in clinic to walk-in clinic with no continuity of care. So, you know, often people have symptoms and I think if they’re seeing the same physician each time, [that physician] would realize that they’re progressing and that there must be something more significant going on. But, in the walk-in clinics, I don’t know if sometimes it’s just another prescription for antibiotics and, ‘See ya’. So, that’s a big problem.” [SP-7] |
| Fee-for-service model | “Patients need a good family doctor, and that’s the problem. We have a system that’s set up to make it very difficult to be a good family doctor, because the payment system is fundamentally set up for seeing six patients an hour. And to actually engage with people properly, you need to take more time. You need to actually hear what people are concerned about; you need to tune in to vague stories. It’s easy to just do a quick ten-minute consultation when someone is just coming with a sore throat or even to diagnose pneumonia. But when somebody comes in and they’re looking really sick. They’ve got a cough and a fever. You can diagnose and treat that in ten minutes. But when you’re talking about vague, uncertain symptoms, you’ve got to tease out the problem and think through issues. That takes time and energy, and the system isn’t set up to allow that. And family doctors who do that are doing it at a cost in terms of finance.” [FP-6] “There are patients who present with very obvious symptoms, but you have to examine them. Cancer can be really obvious and sometimes it can be really insidious, and you have to do a real thorough history […]. The most important thing, in my opinion is sitting down and talking to a patient. Your physical exam is only to either confirm or disconfirm what you’ve picked up on a history, in my opinion. In your history you can probably find most things [...]. One of my first patients was having abnormal stools [...], and so I examined her and I actually felt a mass.” [FP-1] | |
| Investigation | Difficulties determining appropriate testing | “I see frustrated family practitioners who, while they’re trying to sort out ‘Where do I send this patient?’, or try to get an answer, and in the meantime, they order a bunch of tests that are not helpful or are even unnecessary. So, we waste people’s time. We waste resources within the healthcare system doing things that aren’t helpful in coming to a diagnosis.” [SP-5] “For us [family physicians], we know there is a mass; we’ve got some idea of what it is from the imaging. Really, I think it’s up to the specialist to decide what it is they need. So, in the end, I had to call the on-call, then I had to call a surgeon on call to get him in. Then, a big hoo-haw and ultimately the surgeon said, ‘No’, and the patient actually came in with an obstruction and [we] sent him to the emerg […]. At the end of the day, I’m playing ping-pong between the radiologist and the surgeon. Who wants to do it? I don’t know, I think the ball’s in our court a little bit too long here.” [FP-11] “It’s confusing because we’re not experts in particularly uncommon cancers and sometimes it’s just really hard to know what the next step is.” [FP-2] |
| Long waitlists for (sometimes inappropriate) testing | “Most of the time patients present with a lymph node in the neck or armpit or groin, and they present to a walk-in clinic or GP as the first kind of contact. And then generally what happens is the GP orders an imaging test, usually an ultrasound, to confirm that there’s actual lymph nodes, which to me is kind of silly because if you can feel it, then it’s abnormal but that’s what they do. And they do it to characterize it, and then often the radiology report would say, ‘Please do a CT scan’, and so that’s fed back to the physician who then orders a CT scan, but that’s not the test we want for the patient. The patient needs a diagnostic biopsy, so the CT scan is actually not the most appropriate next step, and that often delays things.” [SP-4] “There is not enough budget or new investment into AHS DI to keep up with demand for CT and MRI to keep waitlists where they are. Waitlists are going up.” [SP-20] “Often, if a family physician has a possible mass that could be a sarcoma, they get an ultrasound. The ultrasound people say, ‘Needs an MRI’. They order an MRI. The MRI is twelve to eighteen months. Hopefully that’s not good enough and someone like me gets a call or a fax [from the family doctor] and then I’m able to triage that, maybe see them in my clinic a bit quicker. And then, if my name is on an MRI requisition, I can usually get it within weeks. I’ve seen it many times.” [SP-17] | |
| Specialist advice and referral | Difficulties determining appropriate specialists | “Most of it is trying to figure out who do you know and how do you get your patient to that [specialist][...] That’s not a good way because what it does is it scares the crap out of new physicians. If you are new to the city or you’re a new grad or maybe you’re even new in the country, that is so daunting […]. A lot of doctors, especially those who are out of province, out of country, don’t know what to do because they don’t have the connections and they didn’t do their residency here.” [FP-1] “It would be nice if [family physicians] had some better way of accessing specialists because I know they get very frustrated…especially people who trained elsewhere, that’s very challenging…It’s very hard to come to a new system and learn who the people are to talk to or whatever.” [SP-2] |
| Difficulties approaching specialists and barriers to referrals | “There isn’t a way for a family doctor to reach out. It’s kind of discouraged. My experience in training as a family doctor is nobody likes to get that phone call. Their day is already packed 9 to 5 and there’s no time to schedule an unscheduled phone call from family medicine asking for advice. So, if you’re going to bother a specialist, you’ve got to have a really good reason. And that puts the family doc in a tough situation, where you’re looking for more information but you’re scared that if you ask that it might be inappropriate.” [FP-3] “[Making referrals] is one of the most confusing, non-cohesive parts of the province because the College [Alberta College of Family Physicians] is clear about what they want, but every specialist doctor kind of takes a different direction about how they do [referrals].” [FP-2] “Urology is one of those where you gotta pick up the phone and derail your entire clinic for an hour and a half to make that happen. You do that for the health of your patient, but it is incredibly disruptive.” [FP-1] | |
| Referral patterns and access to testing | “The biggest compliment you can give another provider is to refer them your patient. Physicians work hard to maintain their reputation and provide good care, and see people quickly and they spend their career building referral patterns.” [SP-21] “The difficulty is there are patients who are getting lost in the system, and getting lost in the cold, because they just don’t happen to be with the physician who’s got the rapid access. So, I’d like us to see a system where every single patient gets treated the same way, has the same opportunity access rapid care, as opposed to just being randomly assigned to somebody who might or might not be able to get you in quickly.” [SP-3] |
Note: AHS = Alberta Health Services, CT = computed tomography, DI = diagnostic imaging, FP = family physician, GP = general practitioner, MRI = magnetic resonance imaging, SP = specialist physician.