Agreement between questionnaires and registry data on routes to diagnosis and milestone dates of the cancer diagnostic pathway

BACKGROUND The routes to diagnosis and the time intervals along the diagnostic pathway affect cancer outcomes. Some data on routes to diagnosis and milestone dates can be extracted from registries or databases. When this data is incomplete, inaccurate or non-existing, other data sources are needed. This study investigates the agreement between multiple data sources on routes to diagnosis and milestone dates of cancer pathway. METHODS Information on routes to diagnosis and milestone dates were compared across four data sources (cancer patients, general practitioners, cancer specialists and registries) for breast, colorectal, lung and ovarian cancers across the UK, Scandinavia, Canada and Australia. Agreement on routes to diagnosis and milestone dates was assessed by Kappa and AC1 coefficients and Lin’s concordance correlation coefficient (CCC). RESULTS 4502 patients were included in the analysis of routes to diagnosis. The agreement was almost perfect (kappa = 0.15–0.88, AC1 = 0.86–0.91) for breast cancer, substantial to almost perfect (kappa = 0.07–0.86, AC1 = 0.74–0.93) for colorectal and ovarian cancers, and substantial (kappa = 0.09–0.11, AC1 = 0.65–0.74) for lung cancer. 2287 patients were included in the analysis of milestone dates. The agreement was adequate for all cancer types (CCC = 0.88–0.99); highest agreement was seen for date of diagnosis (CCC = 0.94–0.99). CONCLUSION We found a reasonable agreement between patient/physician questionnaires and registry data for routes to diagnosis and milestone dates. The agreement on routes to diagnosis was generally higher for breast cancer than for colorectal, ovarian and lung cancers. Lower agreement was seen on date of first presentation to primary care and date of treatment initiation compared to date of diagnosis

Time intervals and routes to diagnosis for lung cancer in 10 jurisdictions: cross-sectional study findings from the International Cancer Benchmarking Partnership (ICBP)

OBJECTIVE: Differences in time intervals to diagnosis and treatment between jurisdictions may contribute to previously reported differences in stage at diagnosis and survival. The International Cancer Benchmarking Partnership Module 4 reports the first international comparison of routes to diagnosis and time intervals from symptom onset until treatment start for patients with lung cancer. DESIGN: Newly diagnosed patients with lung cancer, their primary care physicians (PCPs) and cancer treatment specialists (CTSs) were surveyed in Victoria (Australia), Manitoba and Ontario (Canada), Northern Ireland, England, Scotland and Wales (UK), Denmark, Norway and Sweden. Using Wales as the reference jurisdiction, the 50th, 75th and 90th percentiles for intervals were compared using quantile regression adjusted for age, gender and comorbidity. PARTICIPANTS: Consecutive newly diagnosed patients with lung cancer, aged ≥40 years, diagnosed between October 2012 and March 2015 were identified through cancer registries. Of 10 203 eligible symptomatic patients contacted, 2631 (27.5%) responded and 2143 (21.0%) were included in the analysis. Data were also available from 1211 (56.6%) of their PCPs and 643 (37.0%) of their CTS. PRIMARY AND SECONDARY OUTCOME MEASURES: Interval lengths (days; primary), routes to diagnosis and symptoms (secondary). RESULTS: With the exception of Denmark (-49 days), in all other jurisdictions, the median adjusted total interval from symptom onset to treatment, for respondents diagnosed in 2012-2015, was similar to that of Wales (116 days). Denmark had shorter median adjusted primary care interval (-11 days) than Wales (20 days); Sweden had shorter (-20) and Manitoba longer (+40) median adjusted diagnostic intervals compared with Wales (45 days). Denmark (-13), Manitoba (-11), England (-9) and Northern Ireland (-4) had shorter median adjusted treatment intervals than Wales (43 days). The differences were greater for the 10% of patients who waited the longest. Based on overall trends, jurisdictions could be grouped into those with trends of reduced, longer and similar intervals to Wales. The proportion of patients diagnosed following presentation to the PCP ranged from 35% to 75%. CONCLUSION: There are differences between jurisdictions in interval to treatment, which are magnified in patients with lung cancer who wait the longest. The data could help jurisdictions develop more focused lung cancer policy and targeted clinical initiatives. Future analysis will explore if these differences in intervals impact on stage or survival

Diagnostic routes and time intervals for patients with colorectal cancer in 10 international jurisdictions; findings from a cross-sectional study from the International Cancer Benchmarking Partnership (ICBP)

OBJECTIVE: International differences in colorectal cancer (CRC) survival and stage at diagnosis have been reported previously. They may be linked to differences in time intervals and routes to diagnosis. The International Cancer Benchmarking Partnership Module 4 (ICBP M4) reports the first international comparison of routes to diagnosis for patients with CRC and the time intervals from symptom onset until the start of treatment. Data came from patients in 10 jurisdictions across six countries (Canada, the UK, Norway, Sweden, Denmark and Australia).DESIGN: Patients with CRC were identified via cancer registries. Data on symptomatic and screened patients were collected; questionnaire data from patients' primary care physicians and specialists, as well as information from treatment records or databases, supplemented patient data from the questionnaires. Routes to diagnosis and the key time intervals were described, as were between-jurisdiction differences in time intervals, using quantile regression.PARTICIPANTS: A total of 14 664 eligible patients with CRC diagnosed between 2013 and 2015 were identified, of which 2866 were included in the analyses.PRIMARY AND SECONDARY OUTCOME MEASURES: Interval lengths in days (primary), reported patient symptoms (secondary).RESULTS: The main route to diagnosis for patients was symptomatic presentation and the most commonly reported symptom was 'bleeding/blood in stool'. The median intervals between jurisdictions ranged from: 21 to 49 days (patient); 0 to 12 days (primary care); 27 to 76 days (diagnostic); and 77 to 168 days (total, from first symptom to treatment start). Including screen-detected cases did not significantly alter the overall results.CONCLUSION: ICBP M4 demonstrates important differences in time intervals between 10 jurisdictions internationally. The differences may justify efforts to reduce intervals in some jurisdictions.</p