The report Pathways to a Cancer Diagnosis: monitoring variation in the patient journey across NI, 2012-2016 provides, for the first time, a comprehensive picture of the different routes by which cancer patients in Northern Ireland (NI) receive their diagnosis.
A patient’s route to diagnosis is an important predictor of survival.
This can range from screening programmes at one end of the outcome spectrum to those who are diagnosed via emergency admission at the other.
The report is the culmination of an 18 month project involving researchers from Queen’s University Belfast working collaboratively with analysts from the Health and Social Care Business Services Organisation (BSO).
The research was conducted within BSO’s Honest Broker research facility utilising anonymised data from a range of health service organisations in combination with data from the Northern Ireland Cancer Registry.
Liam McIvor, BSO Chief Executive, welcomed the report stating “this is a fantastic piece of work and shows what can be achieved when we collectively harness our data and analytical skills for the longer term benefits of patients”.
Dr Finian Bannon, Principal Investigator on the QUB team, said “The findings of the study will help improve patient outcomes by increasing our understanding of how cancer services are delivered, and how services can be improved.”
In addition to presenting routes-to-diagnosis for All Cancers (excluding non-melanoma skin cancer), information is presented for individual cancer sites (Colorectal, Breast, Lung, Prostate, Cervical, Melanoma) and for groupings of other cancer sites of interest.
Where possible, proportions of patients diagnosed through each route are broken down by a range of factors including gender, age, deprivation, HSC Trust, and stage of disease.
Net survival after three years is also reported for each route-to-diagnosis, with comparisons with England and breakdowns by age and stage.
More detailed breakdowns are available on an interactive tool designed for an internet platform.
The full report and interactive tool is available on the Business Services Organisation’s website.
KEY POINTS
The key points from the Report are:
- Of the 46,068 cancer (excluding non-melanoma skin cancer) patients diagnosed in NI from 2012-2016, one fifth were diagnosed through an emergency route‑to‑diagnosis, and had a poor net survival at 3 years, 23%. The proportion of emergency presentations was higher in deprived areas and among older patients.
- Red flag and routine GP routes accounted for 28% and 21% of NI diagnoses, with each route having a 3-year net survival of 72% and 71%, respectively. The proportion of patients diagnosed through the red flag route increased from around 26% in 2012 to just below 31% in 2015.
- The proportions of patients diagnosed via screening (6%) and emergency presentation route‑to‑diagnosis (20%) in NI were very similar to England. However, compared to England, NI has greater proportions of patients diagnosed via outpatient and inpatient elective routes, and smaller proportions of red flag and routine GP routes. Further work is required to understand the local factors which might be driving such differences given that, for many patients, their route into secondary care, for whatever condition they may have, will typically begin with a consultation with their GP.
- Within NI, the distribution of routes-to-diagnosis differed markedly between the four main cancer sites: female breast, colorectal, lung and prostate. The most common route-to-diagnosis for colorectal (27%) and breast cancer (50%) patients was red flag referral. Most common route-to-diagnosis for prostate cancer patients (37%) was GP referral, while for lung cancer patients (35%), it was emergency presentation.
- The cancer sites with a greater proportion of patients diagnosed via emergency route had worse survival outcomes.
- The proportion of patients diagnosed via screen-detected routes-to-diagnosis varied between the cancer sites with NI screening programmes, breast (29%), colorectal (8%), and cervix (24%), but were not different from England. Like England, survival was higher for screen-detected patients (>90%). Fewer cancer patients were diagnosed through screening with increasing levels of deprivation.
- Six in every ten patients diagnosed via screen detected route-to-diagnosis had Stage I cancer. In contrast, around seven in ten patients diagnosed via emergency presentation route-to-diagnosis had either Stage IV or unknown stage.
- With breast, colorectal and lung cancer patients, the net survival variation between different routes-to-diagnosis reflected the proportion of advanced stage of disease in each route-to-diagnosis.
- In colorectal and lung cancer, there was evidence of more advanced stage of disease at diagnosis in the red flag route compared to routine GP; this may suggest that eligible red-flag symptoms for red-flag referral are associated with more serious disease. The lung survival estimates of patients diagnosed by a red flag were lower than routine GP.
- Cancer sites with poorer survival (e.g. colorectal, lung) had high proportions of patients diagnosed with advanced disease across the range of route to diagnosis. In addition, in these sites a large proportion of patients were diagnosed through an emergency admission.
- Emergency presentation route-to-diagnosis made up around a quarter or more of the patients for blood and lymph cancer (28%), digestive cancer (42%), upper GI tract cancer (27%) and head, neck, brain and eye cancer (24%).
Notes to editors:
- BSO’s Family Practitioner Services Information Unit were successful in a joint bid with QUB for a funding grant of £100k from the Health Foundation. Under its ‘Applying Advanced Analytics’ (AAA) programme, the charity funds projects, to be carried out from within the UK health-service, to build up analytical capacity and to drive monitoring and improvement of service delivery. The successful NI research project aimed to investigate and document the routes by which cancer patients here are diagnosed within the NI healthcare system and assess their corresponding outcomes.
- The National Cancer Registration and Analysis Service (a part of Public Health England) have developed a methodology, using routine data sets to work backwards through patient pathways to examine the sequence of events that led to a cancer diagnosis. Through this analysis eight broad routes were identified and statistics on the percentage of patients diagnosed through each route have been well established in England for a number of years. This project aims to establish a comparable set of statistics for NI for the first time, using anonymised patient information. This could inform targeted implementation of awareness and early diagnosis initiatives and enable assessment of their success.
- The eight main diagnostic routes for which results are presented are shown in table below:
|
Diagnosis Route |
Description |
|
Screen-Detected |
Detected via the breast, cervical or bowel screening programmes |
|
‘Red Flag’ Referral |
Urgent GP Referral with a suspicion of cancer |
|
Emergency Presentation |
An emergency route via A&E, emergency GP Referral, emergency transfer, emergency consultant outpatient referral, emergency admission or attendance |
|
GP Referral |
Routine and urgent referrals where the patient was not referred under the red flag referral route |
|
Inpatient Elective |
Where no earlier admission can be found before admission from a waiting list, booked or planned |
|
Other Outpatient |
An elective route starting with an outpatient appointment: either self-referral, consultant to consultant, other or unknown referral |
|
Death Certificate Only |
No activity data available from any of the source health service systems and with a death certificate diagnosis flagged by the Cancer Registry |
|
Unknown |
No activity data available from any of the source health service systems |
- The project team consisted of analytical staff from the HSCNI Business Services Organisation (BSO) and the Centre for Public Health in Queen’s University Belfast. All of the work was carried out within BSO’s Honest Broker Service (HBS) in a secure ‘safe haven’ setting. The HBS enables access to anonymised, aggregated and in some cases pseudonymised health and social care data to DoH, HSC organisations and, for anonymised data, for health and social care related research. The aim is to enable non-identifiable data to be safely shared to maximise the uses and health service benefits which can be gained from it. The HBS only provides access to anonymised data for health and social care related research.
- The Health Foundation is an independent charity committed to bringing about better health and health care for people in the UK. Their aim is a healthier population, supported by high quality health care that can be equitably accessed. They learn what works to make people’s lives healthier and improve the health care system. From giving grants to those working at the front line to carrying out research and policy analysis, they shine a light on how to make successful change happen.(www.health.org.uk)
- Electronic copies of the full research report are available free of charge from the Business Services Organisation's website.
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