Around 1 in 5 people diagnosed with cancer in the UK take part in a clinical trial.
A study to test a set of questions designed to measure delay in early cancer diagnosis (The ASTRID study)
This study tested questions developed to work out important time points in the lead up to a cancer diagnosis. This study was supported by Cancer Research UK as part of the National Awareness and Early Detection Initiative (NAEDI).
More about this trial
The research team in this study is part of an international group who are looking for ways to improve the time it takes for people with cancer to get diagnosed and treated. There is a lot of interest in how people are diagnosed, and how the process can be improved.
Ideally, the time between someone first noticing a symptom and getting a diagnosis should be as short as possible. Monitoring this may help to show up where any delays are.
Researchers in this study developed a set of questions to help pick out important time points between first noticing a symptom and being diagnosed. But they needed to test these questions.
They recruited people with and without cancer to look at some made up patient situations, and ask if they thought the questions were good enough to help work out these time points. The questionnaire was sent to people with a diagnosis of bowel cancer or lung cancer, to find out if they could understand the questions and if they were able to complete the questionnaire.
The aim of this study was to test how useful the questions are.
Summary of results
This study recruited:
- 13 people who had been diagnosed with bowel cancer
- 12 people who had been diagnosed with lung cancer
- 18 people who didn’t have cancer
- 4 family doctors (GPs)
- 6 researchers
The research team asked the patients taking part how easy or difficult it was to understand and answer the questions. They discussed this as part of a focus group.
The research team spoke to GPs and researchers on the phone. They wanted to find out:
- their views on the challenges they might face
- the challenges they think their patients might face
They then analysed all the information they gathered. The team had 6 main areas of feedback and suggestions. These were based on areas that have been shown to be important in previous research.
1.How they were diagnosed
This included whether people had been to Accident and Emergency (A&E) or their GP as part of being diagnosed. It can be difficult to put this into specific categories because some people see more than one health professional. Or they may have already noticed a symptom when they go for routine screening.
2.The main symptom they had
Some people find this hard to remember, especially if they have multiple health problems. Or they may have several symptoms that they felt were quite general, rather than one that was specific.
3.When they first told their GP
This was often difficult to pin point, especially if people had more than one symptom, or symptoms that came and went over time. The actual date they first went to the doctor with symptoms may be difficult to separate from other appointments and tests.
4.The appointments and tests they had before they were diagnosed
Some people have lots of appointments and tests and find it hard to remember them all. It might be useful to list different types of health care professionals or tests here, as a prompt for people.
5.Date of referral
There was some confusion over this. Some people thought it meant referral for further tests, some thought it meant to another doctor. This would need to be made clear in future questionnaires.
6.Date of diagnosis
Doctors tend to think of this as the date the diagnosis was confirmed with a test (a biopsy result, for example). But patients tend to think of this as the day they were told about the diagnosis. These dates are often different, so researchers need to take care when looking at the answers to these questions.
The research team concluded that measuring how and when people get diagnosed with cancer is often complex and difficult to measure. They suggest that wording of questions needs to be as clear as possible. They hope the results of this study will help researchers in the future to develop useful questionnaires.
We have based this summary on information from the research team. As far as we are aware, the information they sent us has not been reviewed independently (
How to join a clinical trial
Professor David Weller
National Awareness and Early Diagnosis Initiative (NAEDI)
NIHR Clinical Research Network: Cancer
University of Edinburgh