Background
New contribution
Methods
Conceptual framework
Study design and collection and analysis of qualitative data
Results
Lung cancer
# | Interval | From first symptoms to diagnosis |
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8 | 2 weeks | An X-ray was ordered for this patient upon consultation with a physiatrist for tendinitis of the arm: “Actually… It was odd. I mean, because it was a long time that I’d been having… that I was aware of symptoms. But I just attributed it to fatigue.” (p. 4) “I had terrible pain in my back, but since it was in my back, I didn’t think it had anything to do with my chest. But in fact, it was because there was a tumour just opposite it… and I was… I was getting out of breath, I couldn’t go very far, but you know, I had things I needed to get done. I just put it all down to fatigue. So I told myself that if I just rested, everything would be okay… Meanwhile… I had a pretty bad tendinitis in my left arm. I was referred to a physiatrist because, you know, well. And then he started looking me over. It’s coming back to me… I don’t know how… He looked at me and he said… Maybe I had on a sweater that was a bit more [inaudible 0:04:54.8]. He said: ‘On that side, there, it’s bigger than on the other side.’ And then, he had a little lamp, and he said ‘I see a shadow.’ I didn’t understand! Then he said, ‘I think…’ He said, ‘Has it been a long time since you’ve had an X-ray?’ ‘Ah’, I said, ‘it’s been at least… 3 or 4 years.’ He said, ‘If I were you, I’d go right away. It’s worrisome.’” (44, p. 4) Soon after that, in a private radiology clinic, the patient had an X-ray whose results were positive. The results were transmitted the next day and the radiologist prescribed a scan. The patient managed to accelerate the transmission of the scan results to her family physician. |
6 | 1.5 months | This person suffered from restless leg syndrome and very quickly her symptoms worsened to the point that she had difficulty sleeping. Following a worsening of her symptoms, she went to the emergency room of a hospital where she had a contact. She was diagnosed with lung cancer the next day, after being admitted to hospital. “And then, my daughter-in-law had a friend who was an emergency physician at the hospital. So my husband called her. He called her, and [name of daughter-in-law], and he said, ‘You need to try, to see if your friend could… » (p. 6) “So then, I went to see her (at the ER),… and on the 14th, they sent me to neurology, and four or five people came to see me, and they told me I had two cancers: one in the brain, and one in the lungs. Then I called my husband.” |
4 | 2 months | This person, very athletic and active, experienced respiratory problems related to activity. “Then, at a certain point, a Sunday, after the holidays, I had a cough that was dry, dry, dry. I’d been having frequent dry coughs, so much that… I said, I’m choking… on my saliva, you know. What’s wrong with me? A dry, dry, dry cough… And one that had been going on for a long time, and had irritated my throat, and I had spit up some blood. Then I said, Oh! What’s [inaudible 0:07:39.6] you know, ah, either it’s… But me, I hadn’t thought about bronchial tubes. I was thinking more that I had irritated my respiratory tract, anyway. I put it out of my mind, to some extent. It had scared me a little, but one of my friends said, ‘No, no, you need to see a doctor, now, really,…’ ‘OK, I will.’ But then January came along… We went for a hike on the mountain, and as I was climbing the stairs, I was, like…. Me, I described it sort of like bronchospasms. All of a sudden, I couldn’t breathe, I was out of breath, air wasn’t getting through there. […] I called that week, I think, for an appointment with my doctor and got one….” (261, p. 7) She contacted her family physician for her activity-related respiratory problems. The patient, a nurse, thought it was asthma. In addition to prescribing inhalers, her family physician ordered an X-ray and referred her for to a respirologist. After an initial positive X-ray, the physician thought it was early pneumonia and prescribed antibiotic treatment and another lung X-ray. After a second positive result, more advanced investigations were undertaken: a scan and bronchoscopy. |
5 | 3 months | Two or three months before her diagnosis, this person had a first case of bronchitis, which was treated. At that time she had a lung X-ray, which was normal (October 2011). She had bronchitis again a few weeks later. Her family physician ordered a second X-ray. Following those results, he referred her to the hospital for further evaluation. |
7 | 3.5 months | This person felt a lump when washing herself. After several months, seeing that the lump was not going away, she tried making an appointment with her family physician. Because the appointment she was given was two to three weeks away, she went to a walk-in clinic. The physician there sent her immediately for X-rays, read the results the same day, and ordered a scan, which the patient underwent two or three days later. Following the scan results, the physician ordered a biopsy and referred her to a respirologist. |
1 | 4 months | This person experienced symptoms of shortness of breath in November 2012. She had three mechanical valves, one of which habitually leaked. She thought her shortness of breath was related to a problem with her valve. She had a scheduled appointment with her family physician in December. She told him about the problem. Her physician referred her to a surgeon, who saw a hematoma. He gave her an appointment for March 14. After the consultation, the surgeon referred her to the emergency cardiology service (swollen hematoma + patient turning blue). The patient underwent a scan and an MRI. The physician told her the problem was not related to her valves and sent her to the emergency room at the general hospital. At the ER, on March 18, the physicians suspected cancer. The patient was hospitalized. She then underwent several tests and surgeries (four bronchoscopies, a biopsy, a mediastinoscopy) before receiving a diagnosis on May 10. |
3 | 4 months | This person said she experienced shortness of breath (in May). She consulted at a nearby clinic. Her physician sent her for a lung X-ray. Even though the radiologist indicated that it was urgent that the patient be referred for further investigation, the physician did not notify the patient. It was only at a later consultation, for acute respiratory problems, that the results of the diagnostic X-ray conducted several months earlier were read and communicated to the patient. The patient then went immediately to the emergency room, and two days after going to the ER, she received a cancer diagnosis. |
2 | 5 months | This person experienced unusual shortness of breath in the autumn. After returning from a trip she had taken over the holidays, she made an appointment with a physician. On January 15 a physician accepted her on his patient roster. The patient underwent an X-ray and blood tests. Her physician referred her to a respirologist, whom she saw at the end of February. That specialist noted the presence of a mass and prescribed a bronchoscopy and pulmonary function testing. The diagnosis was reached on March 7th. The interval between first symptoms and making an appointment with a physician was rather long. Once the patient was in consultation, the time to diagnosis was between one and a half and two months. |
Intervals
Explanatory factors related to lung cancer
Factors related to patients
Factors related to health system organization
Breast cancer
# | Interval | From first symptoms to diagnosis |
---|---|---|
15 | 1.5 months | This person felt a lump on December 4. She worked in a plastic surgery clinic. She pushed to get an appointment with any of the gynecologists at her gynecology clinic right after the appearance of the first symptoms to obtain a mammogram. She saw the gynecologist one week after the first symptoms. The physician ordered all the tests at the same time, including a surgical consult. She underwent all the investigative tests on the same day. She received her diagnosis less than one month after the positive mammogram. |
13 | 4 months | The person felt a lump during breast self-examination. She talked about it with her family. She went to her gynecologist right away for a mammogram and was tested. Her mammogram was not very clear, so the physicians immediately pursued the investigation further. “But that night, I talked about it with my husband and my daughter, because you always feel a bit silly, right, when… You’re always worried about upsetting people. Anyway, for me… that’s how it is. And then they said to me, ‘Listen, don’t hesitate…” (281, p. 7) The patient consulted in the private sector. Because the mammogram results were inconclusive, the radiologist proposed an ultrasound on the same day: “Finally, well, when I went to XXX on June 16… they did a mammogram [inaudible 08: 15]. They didn’t see anything, so the radiologist who saw me said, ‘I’d like to do an ultrasound right away, but there is a cost.’ Of course, I agreed. So, in the ultrasound they saw something. And then, she said, ‘To be sure there isn’t a cancer growing there… I advise that you make an appointment with us for a biopsy.’ So you see, that meant that, that would have been on July 14, and then, on July 14, the biopsy was done and then I left on vacation. I knew that my gynecologist was also on vacation. And when I got back on August 4, I had a call right away [inaudible 08: 53] from my gynecologist’s secretary saying that she would like to see me on the 8th, which was a Monday. And then, on the 8th, she confirmed that it was cancer.” (p. 8) The biopsy confirmed the result. This patient’s diagnosis was confirmed on September 6, two months after her physician ordered the investigative testing. |
14 | 3 months | This person had a mammogram as part of a breast cancer screening program. She had no symptoms, but her mammogram was positive. Her family physician called her 7 to 10 days after the test. She also received a letter from the Screening Program to verify that her family physician had contacted her. Her physician sent her for an ultrasound in the private sector, saying that it would be faster. Her physician received the results and encouraged her to have a biopsy. The patient got her diagnosis a little more than two months after getting the mammogram results. |
12 | 4.5 months | This woman felt a lump in her breast in the summer. As she was eligible for the province’s breast cancer screening program and had moved to a new region, she contacted them to receive a new mammogram invitation letter. The mammogram was done on November 7. One week later, the laboratory telephoned her to convey the results. “I had already felt a little lump, about the size of a grain of rice, say, no more than that. That was in the summer of 2011, but I ignored it for all kinds of reasons: my work, I…, I…, I had five coworkers who had resigned. It’s a very difficult department, complicated, and it’s becoming impossible to recruit people because they’re afraid of going to work there; so I neglected thing so as not to…. In the end, I was all alone.” When the patient received a call informing her of the positive results of her mammogram, she was advised to undergo the usual testing. She refused, because she felt it would take too long, and decided to consult in the private sector, where she got an appointment three days later. The time between the first positive mammogram and the diagnosis was three days. It should be noted that this person is a nurse who had worked 16 years in a hospital oncology service. “I know very well how things work, the wait times, and in fact I’d been able to see, there, how the system had deteriorated over the past 30 years. But I still had some professional contacts in the specialities. If Dr. Y hadn’t been here, I would have gone to see another in the same hospital that I know well. Or another one at xxx hospital, who’s in radio-oncology, but who would have put me in touch with a hematologist-oncologist. In short, I was well connected. So I had certain advantages, I was well connected, I bypassed the wait times that everyone else has to put up with, I imagine, but… well.” (p. 10). |
9 | 6.5 months | There was a history of breast cancer in her sister. This person did not have a family physician but was followed by a gynecologist. The gynecologist ordered a routine mammogram. The patient postponed the test since she did not like the test: “Having a mammogram is no fun. So I had the… I had the paper, so I went a couple of months without… you know, before making the appointment. At one point, I said to myself…” (p. 3) Her gynecologist called her to tell her that her mammogram was positive and ordered a second mammogram. Shortly after the second mammogram, the patient had an ultrasound, which confirmed the presence of a mass. A biopsy was ordered. She requested an appointment. She called three times and waited two months before someone called her back to make an appointment for the biopsy on August 3. The time between the results of the first positive mammogram and her cancer diagnosis was more than four months. |
11 | 8 months | This woman felt a lump, or more of a discomfort in her breast, in June. “In the month of June, I felt a little lump… I would say, a little discomfort, there, in my breast. But, hey, I said: I often have… You know, I had been menstruating for six months. After the… after my… my endometrial ablation, I menstruated for six months, which was normal for an operation like that. And sure, there was something going on in my breast that was bothering me, but I said, hey, it’s my period, it’s my… my hormones, well, you know. Because I have large breasts, it’s… I had gotten used to that over the years. So I didn’t make much of it, except that in June, my husband’s cousin died of breast cancer. Then, it was like a light went on. Then I said, okay [respondent’s name], maybe you need to see a doctor. That was in the month of June. When I got back from travelling, in October or November… because in September, I felt my lump. We were outside the country. Then, I really felt it, and it was… It was starting to be a little painful, my lump. So then, I said, when I get back from this trip, I definitely need to see a doctor. I went to the doctor, and got the diagnosis in the month of… on January 18, 2011.” (001, p. 1) When she tried to make an appointment with her family physician, she was told he was on vacation. She then decided to consult her gynecologist, who ordered a mammogram. The time between the appointment with the gynecologist and the positive mammogram result was about one month. Her gynecologist received the mammogram results on the day of the exam and sent the patient for an ultrasound. The radiology centre where the mammogram was done was in the same building as the gynecologist’s office. After the results, her physician sent her for a biopsy. The time between the positive mammogram and the cancer diagnosis was nearly three months. |
10 | 13 months | There was a family history. This person had a family physician whom she saw regularly and who prescribed an annual mammogram because of the family history. This person had a breast lump since 2006. The positive results of the mammogram were transmitted to her family physician, but no one notified the patient of the positive result. She learned about the result 11 months later in a routine visit to her family physician. “Aside from having a breast lump that didn’t hurt, I was doing everything right, and having mammograms, and all that. That’s what made me so angry in this whole story, it’s that I wasn’t negligent. And even today, a year later, I can’t accept it! I tell myself, it’s not right! There was something somewhere that… There was someone who didn’t do their job.” (230, p. 1) Her physician noted that the positive mammogram had been done almost a year before and encouraged the patient to start the investigative testing quickly. “So then, she was really angry! She said to me, ‘Now, you’re going to have another mammo. Not in six months, not in two months: Now! And that’s when things started to happen. And when I went to the clinic, they didn’t even want to give me an appointment because it was summer. I said to the woman, I said, ‘Madam, I need an appointment for a mammogram.’ She said, ‘Madam, we don’t have any openings now! Call me in September.’ I said, ‘You don’t understand! It’s an emergency.’ ‘Well, what do you want me to tell you?’ (p. 2) Her family encouraged her to consult in the private sector. The patient had to insist to get an appointment for the two exams that had been prescribed. The fact that her ultrasound was done by a physician who was affiliated with the same hospital as the patient accelerated the biopsy appointment. Interviewer: “OK. So you went through the private sector.” Respondent: “Yes, I had to pay but… There, my husband said, ‘Listen’ he said, ‘it’s your health, I think it’s worth it!’ So I went. They did the mammogram and they told me, if we need a clearer image, we’ll call you within 10 days.’ But they didn’t call me. But I had kept the original of my prescription, and on that prescription, my doctor had written ‘mammogram plus ultrasound’. So I called and asked for an ultrasound appointment, and at first the woman didn’t want to give me an appointment! She said, ‘You weren’t called.’ I said, ‘No, you didn’t call me. But my family doctor wants me to have this ultrasound.’ So I got an appointment, and to my surprise, when I went there, on August 24, it wasn’t a technologist, it was a doctor, a radiologist. She started doing the ultrasound, and she said, ‘Oh,’ she said, ‘you’re not made like everyone else, you, Madam!’ I said, ‘What do you mean by that?’ ‘Well, anyway,’ she said, ‘you’re not made like we see in books.’ I said, ‘Yes, and so?’ She said, ‘You have a mass that’s very large and inflamed.’ And she said, ‘That’s not good!’ So there, I started to panic a little, I’ll admit! And then she asked me, what hospital do you usually go to?’ ‘Well,’ I said, ‘My children were born at XXX.’ She said, ‘Great, that’s where I work. I’ll see you tomorrow for a biopsy.’ And there I was, alone, and she said to me, ‘I think it’s cancer.’”(p. 3) |
The intervals
Explanatory factors related to breast cancer
Factors related to patients
Factors related to health system organization
Colorectal cancer
# | Interval | From first symptoms to diagnosis |
---|---|---|
22 | 1 week | This person had been followed for nearly 30 years in gastroenterology for ulcerative colitis and a non-cancerous tumour. During a routine appointment, the gastroenterologist detected an anomaly and performed a biopsy. The diagnosis was announced less than a week later. |
18 | 4 months | After a routine visit, her family physician ordered a biopsy, which was negative. However, after noticing blood in her stools, the person decided to see her doctor again. “The biopsy was in six months. So he said to me, ‘Listen, go with the private system, $250, it will go faster.’ So, of course, you have a gun to your head, so you go… Finally, the results came back negative […] But in January, then… I had bloody stools. So… then, you start looking. So you go to the walk-in place, they treat you like you’re a bull in a china shop, because you’re not one of their clients! […] But you want an appointment because you have bloody stools! So then they tell you that you need an appointment. So then, the guy, he says to you… He points at you, and says to you, ‘Oh, right, in fact, you have…’ Well, yes! ‘Okay, then, you’ll need an appointment with a… a specialist.’ But there aren’t any until August. No, no, April… the month of April! So, there, because you were threatening. So then you go to see him, and he’s a specialist. He points at you and says, ‘You’re right, you’re bleeding.’ No, now wait a minute: that’s three visits, three times wasted, all because I have blood [in my stools]! But still no tests.” Having been offered an appointment in four months for a colonoscopy, and being a French citizen, the person decided to go to France for treatment. There, within a few days, she underwent the necessary tests and was offered surgery. |
20 | 7 months | The person had a family history of cancer and digestive problems. She took steps immediately when she began experiencing abdominal pain with intense fatigue. However, because she also had hormonal problems, her family physician did not order any other tests at her annual check-up. She returned several weeks later to the walk-in clinic, where antibiotics were prescribed. She went back to see her family physician and obtained a referral to a gastroenterologist, but delayed making an appointment, and when she eventually tried to make one, she found the wait time to be unacceptably long. Finally, because of increasingly severe abdominal pain and an abdominal mass, she decided to go to the emergency room. She was hospitalized, and was first diagnosed with severe anemia, then with an intestinal tumour. |
16 | 8 months | The person consulted her family physician after considerable weight loss. Her physician ordered blood tests and sent her to an internal medicine specialist. After consultation, the latter referred her to a gastroenterologist, who ordered a colonoscopy. “She sent me for a test on my stomach, because I had no symptoms! Everything was working well: the stomach, the… the intestines, it was just… The only thing was… the weight loss. So they started with the stomach: everything looked okay. After that, the next thing was to redo the colonoscopy.” It was the wait for that last exam that took the longest (5 months). |
19 | 12 months (symptoms + treatment for other health problems) + 6 months (investigation) | This person had been feeling very tired for several months: “I was always tired and aching all over. So I decided to have blood tests to see what was wrong. They didn’t find anything. Then I asked my doctor to test for diabetes, because I had a family history, and that’s when they diagnosed diabetes.” After several tests, the person was referred to several different specialists: “Then, he said maybe it was a professional burnout. And that maybe it was also depression. He referred me to an endocrinologist and also to a psychiatrist for an evaluation to see if I was depressed. Which I did, and the psychiatrist said I was in a deep depression; but I kept on telling my doctor, all the doctors, or at least the three doctors I was seeing, that I was depressed because I was fatigued, and because that fatigue came from a physical discomfort that I had all the time, in my buttock and thigh. And then, they told me that it was probably the depression, that I had… physical discomfort because of that. That went on until February, when my buttock swelled up like a balloon and I went to the ER.” In the emergency room, the patient received a diagnosis of perianal abscess. In a follow-up visit, the physician detected an anomaly and referred the patient to surgery. A few days later, the surgeon confirmed the anomaly and prescribed a colonoscopy, which was done a few days later and identified the mass. |
17 | More than one year | Two years before, this person had consulted a physician, who was concerned about her symptoms. He prescribed a colonoscopy, but the wait time was almost a year and the person gave up. She also refused to pay for the test in the private system. However, the symptoms worsened and she went to the emergency room. After several tests, the emergency physician informed her of the diagnosis. |
21 | Several years of symptoms and 7 months of investigation | This person had experienced sporadic bleeding over at least 10 years. “In my case, it had been going on for a few years already, that I occasionally had bleeding… when I had a bowel movement. But everyone told me it was hemorrhoids.” The last time she saw a physician, it was when she was accompanying her husband to a medical appointment. The professional prescribed a hemorrhoid cream for her. “Then last year, my husband had some blood tests done that he had sent to his doctor […] So that time, I went with him, and I met the doctor. That doctor was actually pretty old. So I explained the whole thing to him. He said, ‘I’ll do a rectal exam, but…’ He told me it was hemorrhoids, but I said, ‘Still, I’d like to check this out further.’ So he did the rectal exam, but he said, ‘See, it’s hemorrhoids, we can feel them. I’ll give you a cream; it will stop.’ So, it wasn’t a problem. The cream definitely helped, and it stopped.” However, a few months later, there was a lot of bleeding, and she saw a surgeon through her daughter, who was a nurse. “But several months, a few months later, it started up again, and that time, there was really a lot of bleeding. One day I went to the bathroom and there was really a lot of blood, and I started to have doubts. You know, we don’t know why, but we have a little… And my daughter, she works at the hospital, and she had referred me to a doctor, anyway, who… Well, I didn’t know him myself, but she said he was good, and I saw that he had a private clinic. I telephoned, and I made a appointment. So I went there on a Saturday morning, I went to see him one time, and he did an examination, and he said, ‘Ah, it looks like hemorrhoids, but I’d prefer to send you for a colonoscopy.” That surgeon saw her a few days later for a colonoscopy and then informed her of the diagnosis. |