Theme 2 - The Caper Studies
- Lead Investigator: Prof Willie Hamilton
- Co-investigators: Prof Richard Neal, Dr Peter Rose, Dr Fiona Walter
- Researchers: Dr Liz Shepherd, Sally Stapley; Jacqueline Barrett; Sarah Walker
Theme 2 focuses on primary care. It comprises two projects which study the risks of cancer and map current diagnostic pathways. The latter is believed to be the largest investigative study of this kind that has been undertaken in the UK.
Project 2.1 - Quantifying the risk of cancer
The aim is to quantify the risk of a particular type of cancer given the presentation of a particular symptom or diagnostic result, either singly or in combination. We have previously studied colorectal, lung, prostate, ovary and brain tumours, providing accurate estimates of the risk of cancer when an adult patient presents to their GP with a symptom or a combination of symptoms. Thirteen other cancer sites warrant investigation. The long term aim is to study them all, though the Discovery Programme targets an initial 6-8 cancers, beginning with bladder and pancreas. The studies will all employ similar methodologies and analysis.
For each cancer a matched case control study is carried out using data from the General Practice Database (GPRD). This database stores anonymised copies of primary care records from over 12 million UK patients, representative across the whole of the UK. These records contain full details of every consultation, prescriptions, referral and major outcome (such as cancer). The GPRD is large enough to produce statistically valid results even for the low incidence cancers.
Cases will all be patients with cancer who are aged over 40. All the data one year prior to the diagnosis will be examined; previous experience has shown that no variables found more than one year prior to diagnosis were significant. For each case up to seven controls of the same gender, practice and year of birth will be generated.
For each cancer symptom lists will be developed from existing knowledge, the systematic review and primary care laboratory results - which have been transmitted to practices since 2000. The patient records will then be examined to identify occurrences of the symptoms of interest.
The project will identify and quantify the main clinical features of those cancers which have been under researched. Each study will produce at least one main research paper and the results will also feed into Theme 3.
Project 2.2 - Mapping diagnostic pathways.
The aim is to identify the routes that patients take to cancer diagnosis.
This project is linked very closely to existing projects within the National Awareness and Early Diagnosis Initiative (NAEDI). There are three strands to this project and the first two are managed within NAEDI. The Discovery Programme will have access to the results of the NAEDI projects as Greg Rubin, Richard Neal and William Hamilton are each members of both. The three strands are:
- to perform significant event audits in primary care especially to identify cases with diagnostic error.
- to calculate the intervals between presentation, referral and diagnosis
- to identify routes to diagnosis
Three cohort studies, using GPRD data, will be carried out on colorectal, lung and pancreatic cancers.
Cases will all be patients with the cancer over 40 years old. The diagnoses will all be since 2007, that is, long after the two week clinics were instituted. Records for the 12 months prior to diagnosis will be examined.
The study identifies the first recorded feature of the cancer in the year before diagnosis, all other recorded symptoms, primary care investigations and referrals. The speciality of referral is identified and non-standard referrals (to specialities other than the correct cancer site) will be highlighted.
Pathways will be identified with diagnostic milestones, including primary care investigations for specific cancers (blood tests, imaging), referrals by speciality, episodes of unscheduled care (out of hours primary care, A & E attendances, secondary care admissions) and inter-consultant referrals.
The project will identify and quantify the main routes that patients take to diagnosis. The study will explain the reasons why so few patients take the standard route via two week wait referral from primary care. The results will also feed into Theme 3.
New Discovery Research publication
The SYMPTOM Study team's research into symptom appraisal for colorectal cancer has been published in BMJ Open. This is a unique piece of research which compares the appraisal and help seeking experiences of patients with colorectal cancer symptoms who go on to have cancer and those who turn out to have non-cancer conditions. The research did not identify any clear differences between the two groups but did identify important barriers to presentation around the ‘private nature’ of colorectal symptoms which will prove useful to policy makers and the design of awareness campaigns. To read more about the research paper see the results section here.
Discovery conference slides available & new research publications
The Discovery Programme held its research conference at the Royal College of General Practitioners on June 2nd 2015. The team presented their research findings and outlined the impact of the programme to a wide range of patient groups, clinicians, policy makers, researchers and journalists. The PowerPoint slides used during the presentation have been uploaded to this website and can be viewed here.
There are also 2 new research papers to report. Chantal Balasooriya-Smeekens has published the literature review of her PhD in Psycho-Oncology, "The role of emotions in time to presentation for symptoms suggestive of cancer: a systematic review of quantitative studies". Abstract and publication details are here and further papers from Chantal's PhD will be published soon.
Nafees Din has published a new paper under the Discovery related research umbrella. The paper uses Discovery data drawn from the CAPER (theme 2) studies and considers "Age and Gender Variations in Cancer Diagnostic Intervals in 15 Cancers". Full publication details and abstract can be found here.