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Northern Ireland Cancer Registry

N. Ireland Cancer Registry

Module 4 of the International Benchmarking Partnership (ICBP)

Module 4

A study investigating the root causes of diagnosis and treatment delays in four cancer sites (breast, lung, colorectal, and ovarian).

Cancer survival in NI, although improving, lags behind that of many countries for lung, breast, colon, rectum and ovarian cancer (Coleman et al 2011). The reasons for poorer survival may lie with delayed diagnosis. Late diagnosis of cancer can be caused by late patient presentation or delays in primary or hospital care. In NI, 64% of lung cancer patients presented with late stage disease and only 11% were suitable for curative surgery (Bannon & Gavin 2009).  In addition, 43% of colon cancers present as emergencies, while 57% of screen age women with breast cancer present outside of screening. Earlier diagnosis is known to improve survival.

The variation of outcomes in cancer survival across countries with similar levels of spending and resources remains unexplained. There is a wide range of views but a lack of clear evidence as to why cancer outcomes vary and therefore about how resources can be used most effectively. Survival differences can arise from many factors including patient characteristics, nature of diagnostic and screening services, cultural and societal factors and quality of treatments available.

This project will explore differences in total delay in the pathway to treatment for four cancers (breast, lung, colorectal and ovarian) and the contribution of different elements to that delay (e.g. patient, primary care, and hospital delays). Data collected will allow international comparison of the NI results to the 11 other jurisdictions.

Johnny Price

Consultant Gynaecologist

Belfast Trust

Stephen Kirk

Consultant Breast Surgeon

South Eastern Trust

Roy Maxwell

Consultant Colorectal Surgeon

Belfast Trust

Jonathan McAleese

Consultant Clinical Oncologist (lung)

Northern Trust

Miriam McCarthy

Secretary: Amy Harvey

Consultant Public Health Medicine

Public Health Agency

Nigel Hart

GP

Dept. General Practice, QUB

Sarah Williamson/ Debbie Wightman

Cancer Services General Manager

Belfast Trust

Heather Monteverde

General Manager

Macmillan Cancer Support

Claire Leathem

NICRN Primary Care Nurse

Primary Care Network

Dalrene Masson

Clinical Audit Facilitator

GAIN

Eileen Dillon

Lead Clinical Research Nurse

NI Cancer Trials Centre

Ethna McFerran

Clinical Research Nurse

NI Cancer Trials Centre

Ruth Hall

Clinical Research Nurse

NI Cancer Trials Centre

Anna Gavin

Director

NICR

Conan Donnelly

Statistician

NICR

Jackie Boylan

Research Fellow: Project Coordinator

NICR

 

It aims to collect survey data from 800 patients and their General Practitioners to determine reasons for delay in cancer presentation and to document patient experiences during the process of diagnosis and treatment. Data is being collected using standardized methodologies and questionnaires which will allow comparison of the NI results to the 11 other jurisdictions (New South Wales, and Victoria (Australia), Alberta, British Columbia, Manitoba and Ontario (Canada), Sweden, Denmark, Norway, England, and Wales) as part of an international cancer benchmarking partnership.

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