Symptoms
From the subjective (S) data of the 57 patients with CRC during the year before referral 210 presenting symptoms were coded (Figure 3). The most prevalent symptoms were abdominal pain (number of complaints = 28), blood/slime in faeces (n = 21), diarrhoea (n = 19), and change in bowel habits (n = 19). Less specific symptoms such as stomach complaints/vomiting (n = 13), back pain (n = 12), fatigue (n = 10), flatulence, bloating, or rumbling in the abdominal area (n = 8) were less frequently recorded.
Figure 3. Complaints, mentioned in electronic patient records of the purposive sample, n = 57, in the year before referral. Figures in brackets indicate number of complaints, total complaints = 210. The dark purple complaints are the well known ‘alarm symptoms’. The mid-purple complaints are less specific in the abdominal area. The pale purple complaints are general and not related to the abdominal area.
Two major themes emerged during the qualitative analysis. The first comprised cases where ‘missed diagnostic opportunities’ may have occurred, leading to less timely diagnoses (n = 35). The second comprised cases where no improvement in the diagnostic process could have been expected (n = 22).
Theme 1: possible missed diagnostic opportunities
Possible missed diagnostic opportunities, as derived from the qualitative analysis of electronic patient records, may either be attributed to patient factors or doctor factors.
Patient factors included many patients appearing to wait for prolonged periods before presenting themselves with symptoms they experienced. Furthermore, patients who visited their GP frequently did not always mention complaints related to their bowels when they occurred, but only after some time. For example, a patient who had visited the GP for various reasons, such as eczema, coughing, and diabetes, at one point mentioned they also had daefecation problems:
‘For a prolonged time (+/−1 year) increasing defaecation problems, alternating pattern, sometimes slimy and with blood.’
(S data field, Male [M], 70 years)
Sometimes patients cancelled appointments when complaints had diminished, which led to longer intervals when complaints returned. One patient, who was scheduled for a colonoscopy, cancelled that appointment because their symptoms had gone. Longer intervals were also due to circumstances in patients’ lives. Patients’ worries about their home situation, problems experienced by their partner, or other situations in their lives, also led to a later presentation of their own health problems. For example, a female patient who had been consulting for diarrhoea and other abdominal complaints appeared to stop doing that for a couple of months because a situation with her husband interfered:
‘Panicked, cannot deal with illness of husband and missing care of children, hyperemotional.’
(S data field, Female [F], 84 years)
Examples of doctor factors were where, in many cases, GPs appeared to attribute symptoms to pre-existing conditions. For example, the symptoms of a patient who presented with lower abdominal pain and a history of diverticulitis were, at first, attributed to that condition. Another patient with persistent abdominal pain was referred to their gynaecologist because of a gynaecological history. Other abdominal or pelvic illnesses also seemed to mask the symptoms, for example, a patient who tested positive for a urinary tract infection (UTI) had a possible missed diagnostic opportunity after receiving test results and subsequent UTI treatment. The UTI diagnosis possibly did not explain all of the symptoms.
The intermittent nature of symptoms also led to longer diagnostic intervals in primary care. Non-persistent pain, and episodes of diarrhoea, or obstipation, all made it difficult to pinpoint the exact nature of these complaints. Some GPs did not immediately think of a CRC diagnosis in cases where patients presented with vague complaints, such as ongoing tiredness or prolonged and unexplained fever.
GPs also seemed susceptible to their patients’ explanations for the reasons behind the symptoms. Patients reported symptoms that could be attributed to CRC, but they gave good explanations of other causes. Their GP tended to accept these explanations and did not investigate the symptoms further. For example, a patient reported melaena and thought it was caused by their medication.
In some cases, GPs seemed to attribute possible symptoms of CRC to side effects of medication. For one patient, who consistently complained for 2.5 months over three visits about having ‘moist flatulence’ and was referred/diagnosed 5 months after onset, the GP coded:
‘Still problems with metoprolol (again moist flatulence), did not take medication, last 10 days little complaints -> let’s try enalapril.’
(P data field, M, 64 years, rectal cancer)
Consultation behaviour by patients may also have contributed to prolonged diagnostic intervals. Patients who presented themselves frequently to their GP, with a variety of complaints, seemed to be less frequently referred for further investigation. Specialists also appeared to miss diagnostic opportunities. For example, a gastroenterologist coded:
‘Black defaecation with red colouring. Probably gastrointestinal bleeding, check Hb again in 2 months? ’
(O data field, M, 74 years, colon cancer)
In some cases, GPs stuck to their own preliminary diagnosis and did not re-evaluate their patient during subsequent consultations. This was also the case when one of the colleagues, in a case where there were multiple GP workers, had made a preliminary diagnosis, and another GP would carry on that line of thinking and not re-evaluate it.
Theme 2: improvements in diagnostic process unlikely
Among the 22 patients with CRC in this group, four did not have a GP involved in the diagnostic process. Of these, two were diagnosed by the national screening programme. Other patients presented themselves at emergency hospital care or were referred within hospital care. The remainder mainly had swift referrals, so these notes were markedly shorter.
It frequently appeared that the GP had correctly interpreted symptoms and quickly referred to secondary care for diagnosis. In many cases patients were quickly referred because of the fact that all ‘red flag symptoms’ had presented. These seemed to be patients who had not visited their GP in the last year, and presented with more than one alarm symptom. For example, a GP coded:
‘Lost a lot of weight (6 kg) in short period, heavy faecal blood loss. Since 6 weeks tumultuous bowel, no pain. Frequent urgencies. Haemorrhoids around rectum. No deviances with rectal toucher. Decided to refer.’
(M, 56 years, rectal cancer)
