What would primary care practitioners do differently after a delayed cancer diagnosis? Learning lessons from their experiences.

OBJECTIVE: Diagnosis of cancer is challenging in primary care due to the low incidence of cancer cases in primary care practice. A prolonged diagnostic interval may be due to doctor, patient or system factors, or may be due to the characteristics of the cancer itself. The objective of this study was to learn from Primary Care Physicians' (PCP) experiences of incidents when they had failed to think of, or act on, a cancer diagnosis. DESIGN: A qualitative, online survey eliciting PCP narratives. Thematic analysis was used to analyse the data. SETTING AND SUBJECTS: A primary care study, with narratives from 159 PCPs in 23 European countries. MAIN OUTCOME MEASURES: PCPs' narratives on the question 'If you saw this patient with cancer presenting in the same way today, what would you do differently? RESULTS: The main themes identified were: thinking broadly; improvement in communication and clinical management; use of other available resources and 'I wouldn't do anything differently'. CONCLUSION (IMPLICATIONS): To achieve more timely cancer diagnosis, PCPs need to provide a long-term, holistic and active approach with effective communication, and to ensure shared decision-making, follow-up and continuing re-assessment of the patients' clinical conditions.

Diagnosing cancer in primary care is challenging due to the low incidence of cancer in practice and the multiple confounding factors that are involved in the diagnostic process.The need to think broadly, make improvements in communication and clinical management, and use other available resources were the main themes from Primary Care Physicians' (PCPs') narratives about their learning experiences from missed or late cancer diagnoses.A long-term, holistic and active approach with effective communication, follow-up and continuing re-assessment of the patients' clinical conditions was another theme for making improvements.Some PCPs, on reflection, would not have done anything differently.

Exploring why European primary care physicians sometimes do not think of, or act on, a possible cancer diagnosis. A qualitative study.

BACKGROUND: While primary care physicians (PCPs) play a key role in cancer detection, they can find cancer diagnosis challenging, and some patients have considerable delays between presentation and onward referral. AIM: To explore European PCPs' experiences and views on cases where they considered that they had been slow to think of, or act on, a possible cancer diagnosis. DESIGN & SETTING: A multicentre European qualitative study, based on an online survey with open-ended questions, asking PCPs for their narratives about cases when they had missed a diagnosis of cancer. METHOD: Using maximum variation sampling, PCPs in 23 European countries were asked to describe what happened in a case where they were slow to think of a cancer diagnosis, and for their views on why it happened. Thematic analysis was used to analyse the data. RESULTS: A total of 158 PCPs completed the questionnaire. The main themes were as follows: patients' descriptions did not suggest cancer; distracting factors reduced PCPs' cancer suspicions; patients' hesitancy delayed the diagnosis; system factors not facilitating timely diagnosis; PCPs felt that they had acted wrongly; and problems with communicating adequately. CONCLUSION: The study identified six overarching themes that need to be addressed. Doing so should reduce morbidity and mortality in the small proportion of patients who have a significant, avoidable delay in their cancer diagnosis. The 'Swiss cheese' model of accident causation showed how the themes related to each other.

Use of faecal immunochemical tests common in patients with suspected colorectal cancer but unrelated to travel distance to secondary care: a population-based study from Swedish primary care.

BACKGROUND: Evidence is increasing for the use of faecal immunochemical tests (FITs) for occult blood as diagnostic tools when colorectal cancer can be suspected. FITs have been used for this purpose in Swedish primary care since around 2005 despite absence of supporting guidelines. To our knowledge, the extent of this use has not been studied. OBJECTIVE: To investigate the use of FITs as diagnostic tools, and if the use was related to patient age, sex and travel time from primary care to diagnostic facilities in secondary care. DESIGN: Population-based retrospective study using data from electronic health records. SETTING AND SUBJECTS: Patients ≥18 years that provided FITs in primary care in five Swedish health care regions during 2015. Driving times from their primary care centres to secondary care were calculated. MAIN OUTCOME MEASURES: The proportion of patients that provided FITs was calculated for each region, different age intervals and grouped driving times. RESULTS: 18,913 patients provided FITs. The proportion of listed patients in the five regions that provided FITs increased with age: 0.86-1.2% for ages <65 years, 3.6-4.1% for ages 65-79 years and 3.8-6.1% for ages ≥80 years. Differences between the regions were small. There was no overall correlation between the proportion of patients that provided FITs and driving time to secondary care. CONCLUSION: FITs were used extensively in Swedish primary care with a higher use in older age groups. There was no tendency towards a higher use of FITs at primary care centres with longer driving times to secondary care.Key PointsEvidence is increasing for the use of faecal immunochemical tests (FITs) as diagnostic tools when colorectal cancer can be suspected. We investigated the use of FITs in Sweden.FITs were used extensively in primary care especially in older age groups.There were small differences in the use of FITs between five studied health care regions.There was no tendency towards a higher use of FITs at primary care centres with longer driving times to diagnostic facilities in secondary care.

Diagnostic accuracy for colorectal cancer of a quantitative faecal immunochemical test in symptomatic primary care patients: a study protocol.

BACKGROUND: There is increasing evidence supporting the use of faecal immunochemical tests (FIT) in patients reporting symptoms associated with colorectal cancer (CRC), but most studies until now have focused on selected subjects already referred for investigation. We therefore set out to determine the accuracy and predictive values of FIT in a primary care population. METHOD: A prospective, multicentre, single-gated comparative diagnostic study on quantitative FIT in patients aged 40 years and above presenting in primary care with symptoms associated with CRC will be conducted. Patients representing the whole spectrum of severity of such symptoms met with in primary care will be eligible and identified by GPs. Participants will answer a short form on symptoms during the last month. They will provide two faecal samples from two separate days. Analyses will be performed within 5 days (QuikRead go®, Aidian Oy). The analytical working range is 10-200 µg Hb/g faeces. Reference test will be linked to the Swedish Colorectal Cancer Registry up to 2 years after inclusion. Accuracy, area under ROC curves, and predictive values will be calculated for one FIT compared to the highest value of two FIT and at cutoff < 10, 10-14.9, 15-19.9 and ≥ 20 µg Hb/g faeces. Subgroup analyses will be conducted for patients with anaemia and those reporting rectal bleeding. A model-based cost-effectiveness analysis based on the clinical accuracy study will be performed. Based on previous literature, we hypothesized that the sensitivity of the highest value of two FIT at cutoff 10 µg Hb/g faeces will be 95% (95% CI + / - 15%). The prevalence of CRC in the study population was estimated to be 2%, and the rate of non-responders to be 1/6. In all, 3000 patients will be invited at 30 primary care centres. DISCUSSION: This study will generate important clinical real-life structured data on accuracy and predictive values of FIT in the most critical population for work-up of CRC, i.e. patients presenting with at times ambiguous symptoms in primary care. It will help establish the role of FIT in this large group. TRIAL REGISTRATION: NCT05156307 . Registered on 14 December 2021-retrospectively registered.

Diagnosing colorectal cancer in primary care: cohort study in Sweden of qualitative faecal immunochemical tests, haemoglobin levels, and platelet counts.

BACKGROUND: Colorectal cancer (CRC) diagnostics are challenging in primary care and reliable diagnostic aids are desired. Qualitative faecal immunochemical tests (FITs) have been used for suspected CRC in Sweden since the mid-2000s, but evidence regarding their effectiveness is scarce. Anaemia and thrombocytosis are both associated with CRC. AIM: To evaluate the usefulness of qualitative FITs requested for symptomatic patients in primary care, alone and combined with findings of anaemia and thrombocytosis, in the diagnosis of CRC. DESIGN AND SETTING: A population-based cohort study using electronic health records and data from the Swedish Cancer Register, covering five Swedish regions. METHOD: Patients aged ≥18 years in the five regions who had provided FITs requested by primary care practitioners from 1 January 2015 to 31 December 2015 were identified. FIT and blood-count data were registered and all CRC diagnoses made within 2 years were retrieved. Diagnostic measurements were calculated. RESULTS: In total, 15 789 patients provided FITs (four different brands); of these patients, 304 were later diagnosed with CRC. Haemoglobin levels were available for 13 863 patients, and platelet counts for 10 973 patients. Calculated for the different FIT brands only, the sensitivities for CRC were 81.6%-100%; specificities 65.7%-79.5%; positive predictive values 4.7%-8.1%; and negative predictive values 99.5%-100%. Calculated for the finding of either a positive FIT or anaemia, the sensitivities increased to 88.9-100%. Adding thrombocytosis did not further increase the diagnostic performance. CONCLUSION: Qualitative FITs requested in primary care seem to be useful as rule-in tests for referral when CRC is suspected. A negative FIT and no anaemia indicate a low risk of CRC.

Qualitative faecal immunochemical tests (FITs) for diagnosing colorectal cancer in patients with histories of rectal bleeding in primary care: a cohort study.

BACKGROUND: Rectal bleeding is considered an alarm symptom for colorectal cancer (CRC) but it is common and mostly caused by benign conditions. Qualitative faecal immunochemical tests (FITs) for occult blood have been used as diagnostic aids for many years in Sweden when CRC is suspected. The study aimed to evaluate the usefulness of FITs requested by primary care physicians for patients with and without histories of rectal bleeding, in the diagnosis of CRC. METHODS: Results of all FITs requested in primary care for symptomatic patients in the Örebro region during 2015 were retrieved. Data on each patient's history of rectal bleeding was gathered from electronic health records. Patients diagnosed with CRC within 2 years were identified from the Swedish Cancer Register. The analysis focused on three-sample FITs, the customary FIT in Sweden. RESULTS: A total of 4232 patients provided three-sample FITs. Information about the presence/absence of rectal bleeding was available for 2027 patients, of which 59 were diagnosed with CRC. For 606 patients with the presence of rectal bleeding, the FIT showed sensitivity 96.2%, specificity 60.2%, positive predictive value 9.8% (95% CI 6.1-13.4) and negative predictive value 99.7% (95% CI 99.2-100) for CRC. For 1421 patients without rectal bleeding, the corresponding figures were 100%, 73.6%, 8.3% (95% CI 5.6-10.9) and 100% (95% CI 99.6-100). CONCLUSION: The diagnostic performance of a qualitative three-sample FIT provided by symptomatic patients in primary care was similar for those with and without a history of rectal bleeding. FITs seem useful for prioritising patients also with rectal bleeding for further investigation.

Patient-reported and doctor-reported symptoms when faecal immunochemical tests are requested in primary care in the diagnosis of colorectal cancer and inflammatory bowel disease: a prospective study.

BACKGROUND: Rectal bleeding and a change in bowel habits are considered to be alarm symptoms for colorectal cancer and they are also common symptoms for inflammatory bowel disease. However, most patients with these symptoms do not have any of these diseases. Faecal immunochemical tests (FITs) for haemoglobin are used as triage tests in Sweden and other countries but little is known about the symptoms patients have when FITs are requested. OBJECTIVE: Firstly, to determine patients' symptoms when FITs are used as triage tests in primary care and whether doctors record the symptoms that patients report, and secondly to evaluate the association between symptoms, FIT results and possible prediction of colorectal cancer or inflammatory bowel disease. METHODS AND MATERIALS: This prospective study included 364 consecutive patients for whom primary care doctors requested a FIT. Questionnaires including gastrointestinal symptoms were completed by patients and doctors. RESULTS: Concordance between symptoms reported from patients and doctors was low. Rectal bleeding was recorded by 43.5% of patients versus 25.6% of doctors, FITs were negative in 58.3 and 52.7% of these cases respectively. The positive predictive value (PPV) of rectal bleeding recorded by patients for colorectal cancer or inflammatory bowel disease was 9.9% (95% confidence interval [CI] 5.2-14.7); for rectal bleeding combined with a FIT the PPV was 22.6% (95% CI 12.2-33.0) and the negative predictive value (NPV) was 98.9% (95% CI 96.7-100). For patient-recorded change in bowel habits the PPV was 6.1% (95% CI 2.4-9.8); for change in bowel habits combined with a FIT the PPV was 18.2% (95% CI 9.1-30.9) and the NPV 100% (95% CI 90.3-100). CONCLUSIONS: Doctors should be aware that, during consultations, they do not record all symptoms experienced by patients. FITs requested in primary care, when found positive, may potentially be of help in prioritising referrals, also when patients present with rectal bleeding or change in bowel habits.

Patients' experiences of using the Integrated Palliative care Outcome Scale for a person-centered care: A qualitative study in the specialized palliative home-care context.

The aim of this study was to explore patients' experiences of using the Integrated Palliative care Outcome Scale (IPOS) during specialized palliative home care. The study adopted a qualitative approach with an interpretive descriptive design. Interviews were performed with 10 patients, of whom a majority were diagnosed with incurable cancer. Our findings suggest that the use of IPOS as a basis for conversation promotes safe care by making the patients feel confident that the care provided was adapted to them which gives them a sense of safety. IPOS facilitated discussions between patients and nurses about care needs. The patients believed that using IPOS enabled reflection on their well-being and life situation. In conclusion, the study finds that using IPOS is beneficial and provide ways to enable person-centered care and with advantage could be used in specialized palliative home care. The results may help overcome barriers and facilitate the use of patient-reported outcome measures (PROMs). To enable the use of PROMs such as IPOS in palliative home care, nurses need education and opportunities to develop routines that enable patients' voice to be heard and thereby compose a basis for care.

Faecal immunochemical tests for the diagnosis of symptomatic colorectal cancer in primary care: the benefit of more than one sample.

OBJECTIVE: Faecal immunochemical tests (FITs) are used to screen for colorectal cancer (CRC) and as diagnostic aids in symptomatic patients. However, the number of samples per FIT varies. It is unclear if there is any advantage to analyse multiple-sample FITs in symptomatic patients. DESIGN AND SETTING: This is a post hoc analysis of a retrospective study that included all cases of CRC and adenomas with high-grade dysplasia (HGD) between 2005 and 2009 in the county of Jämtland, Sweden. SUBJECTS: All patients with CRC and adenomas with HGD that initially presented with symptoms to primary care and delivered FITs. MAIN OUTCOME MEASURE: The likelihood of a positive FIT in cases of CRC and adenomas with HGD; when analysing one, two or three samples. RESULTS: Of 195 patients, 160 delivered three-sample FITs. Using the 139 cases in which at least one sample was positive, the likelihood of detecting a positive sample upon analysis of only one of the three samples was 0.91 (95% CI: 0.85-0.95), indicating that 13 positive cases may have been missed. CONCLUSION: Use of a one-sample FIT instead of a three-sample FIT as a diagnostic aid may result in the missing of one tenth of symptomatic CRCs and adenomas with HGD.

Diagnosing colorectal cancer and inflammatory bowel disease in primary care: The usefulness of tests for faecal haemoglobin, faecal calprotectin, anaemia and iron deficiency. A prospective study.

OBJECTIVE: Abdominal complaints are common reasons to consult primary care but they are seldom caused by colorectal cancer (CRC), high-risk adenomas (HRAs), or inflammatory bowel disease (IBD). Reliable diagnostic aids would be helpful in deciding which patients to refer for bowel imaging. Our aim was to assess the value of a faecal immunochemical test (FIT) and a faecal calprotectin (FC) test in detecting CRC, HRAs and IBD in primary care, and the value of combining these tests with anaemia and iron-deficiency tests. MATERIALS AND METHODS: This prospective study included 373 consecutive patients that received a FIT or a FC test ordered by a primary care physician. We collected samples for FITs, FC tests, full blood counts and iron-deficiency tests. Physicians were instructed to refer patients with a positive FIT or FC test (cut-off ≥100µg/g) for bowel imaging. The patients' presenting symptoms were recorded. Patients were followed for 2 years. RESULTS: The best test for detecting CRC and IBD was the combination of the FIT and haemoglobin concentration. This test had a sensitivity, specificity, positive predictive value and negative predictive value of 100%, 61.7%, 11.7% and 100%, respectively. The FIT detected a significantly larger proportion of CRC, HRAs and IBD than the FC test (0.92 versus 0.46, 95% confidence interval 0.22-0.67). CONCLUSION: A negative FIT combined with a normal haemoglobin concentration could rule out CRC and IBD with a high degree of safety. This could be useful in prioritising referrals for bowel imaging from primary care.

Could it be colorectal cancer? General practitioners' use of the faecal occult blood test and decision making--a qualitative study.

BACKGROUND: Abdominal complaints are common reasons for contacting primary care physicians, and it can be challenging for general practitioners (GPs) to identify patients with suspected colorectal cancer (CRC) for referral to secondary care. The immunochemical faecal occult blood test (iFOBT) is used as a diagnostic aid in primary care, but it is unclear how test results are interpreted. Studies show that negative tests are associated with a risk of delayed diagnosis of CRC and that some patients with positive tests are not investigated further. The aim of this study was to explore what makes GPs suspect CRC and to investigate their practices regarding investigation and referral, with special attention on the use of iFOBTs. METHOD: Semi-structured individual interviews were conducted with eleven purposely selected GPs and registrars in Region Jämtland Härjedalen, Sweden, and subjected to qualitative content analysis. RESULTS: In the analysis of the interviews four categories were identified that described what made the physicians suspect CRC and their practices. Careful listening-with awareness of the pitfalls: Attentive listening was described as essential, but there was a risk of being misled by, for example, the patient's own explanations. Tests can help-the iFOBT can also complicate the diagnosis: All physicians used iFOBTs to various extents. In the absence of guidelines, all found their own ways to interpret and act on the test results. To refer or not to refer-safety margins are necessary: Uncertainty was described as a part of everyday work and was handled in different ways. Common vague symptoms could be CRC and thus justified referral with safety margins. Growing more confident-but also more humble: With increasing experience, the GPs described becoming more confident in their decisions but they were also more cautious. CONCLUSIONS: Listening carefully to the patient's history was essential. The iFOBT was frequently used as support, but there were considerable variations in the interpretation and handling of the results. The diagnostic process can be described as navigating uncertain waters with safety margins, while striving to keep the patient's best interests in mind. The iFOBT may be useful as a diagnostic aid in primary care, but more research and evidence-based guidelines are needed.

Immunochemical faecal occult blood tests in primary care and the risk of delay in the diagnosis of colorectal cancer.

OBJECTIVE: To evaluate the value, risks, and shortcomings of immunochemical faecal occult blood tests (iFOBTs) in the diagnosis of colorectal cancer (CRC) and adenomas with high-grade dysplasia (HGD) in patients initially presenting to primary care. DESIGN: A retrospective population-based study. SETTING AND SUBJECTS: All 495 cases of CRC and adenomas with HGD diagnosed in the county of Jämtland, Sweden from 2005 to 2009. RESULTS: Of 495 patients 323 (65%) initially presented to primary care. IFOBTs were performed in 215 of 323 (67%) patients. The sensitivity of iFOBT for CRC and adenomas with HGD was 88% (83% when patients with a history of rectal bleeding were excluded). Of 34 patients with anaemia found en passant, 10 had negative iFOBTs. Time to diagnosis was longer for patients with negative iFOBTs (p < 0.0005). CONCLUSION: IFOBT might be helpful in selecting which patients to refer for colonoscopy. However, iFOBT has a limited sensitivity as a diagnostic test for CRC and adenomas with HGD. Relying only on iFOBT for colonoscopy referral could delay diagnosis, especially for patients with anaemia found en passant.