International Cancer Benchmarking Partnership (ICBP) Module 4: Root Causes of Diagnosis and Treatment Delay in Four Cancer Sites: Lessons Learnt from the Northern Ireland Pilot Study


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Jackie Boylan1, Anna Gavin1, Conan Donnelly1, Module 4 Working Group2
1Queen's University Belfast, Belfast, UK, 2ICBP Module 4 Working Group, Canada, Australia, UK, Norway, Denmark, Sweden, UK

Background

The ICBP is a unique and innovative global partnership of clinicians, academics and policymakers seeking to understand how and why cancer survival varies across 12 jurisdictions in 6 countries: Australia (New South Wales and Victoria), Canada (Alberta, British Columbia, Manitoba and Ontario), Denmark, Norway, Sweden, United Kingdom. The ICBP is looking at four cancer sites: breast, lung, colorectal and ovarian cancer and consists of 5 research modules. Module 4 is comparing diagnostic and treatment delays via a survey study. Pilot studies were conducted in Australia (Victoria), England and Northern Ireland (NI). The Northern Ireland pilot study findings are reported.

Method

Following ethical approval, recently diagnosed lung, breast, colorectal and ovarian cancer patients were identified using electronic sources. The Cancer Trials Network Clinical Research Nurses checked patients for eligibility (exclusion criteria: patient not physically or psychologically capable of participating or at end of life or unaware of diagnosis) before checking vital status. Data were collected via postal questionnaires (both patient and their GP) and from patient secondary care notes. 50 breast, lung and colorectal, and 21 ovarian cancer patients were invited.

Results

Patient identification worked well and the response rate (RR) for patients was 45%. 77 patients took part, however some patients did not complete the consent correctly, therefore 69 patients were included (40% response rate). The RR for GPs was 69%. Reminders were very important in increasing the RR for both patients and GPs. Following the pilot study the questionnaires were shortened, the sampling procedure amended and lessons were learned regarding the number of patients that need to be identified and contacted.

Conclusion

Conducting a pilot study was extremely valuable, recruitment for the main study will start in July 2013.