A study exploring people’s experiences of getting a diagnosis of lung or bowel cancer

Cancer type:

Bowel (colorectal) cancer
Lung cancer
Non small cell lung cancer
Small cell lung cancer

Status:

Results

Phase:

Other

This study explored the experiences of people who had recently been diagnosed with lung cancer or bowel cancer in England, Denmark and Sweden.

More about this trial

Researchers in England, Denmark and Sweden interviewed people who had been diagnosed with lung cancer or bowel cancer in the last 6 months. They wanted to find out about their experiences that led to a cancer diagnosis.

The researchers compared the experiences of everyone to identify where there were differences, and why.

England, Denmark and Sweden have similar health care systems that are funded by the tax people pay. But in Sweden, people also pay towards their appointments. This system is called co-payment. Swedish people tend to see their GP less often, but for longer each time. People in all 3 countries pay for their prescriptions.        

The aim of the study was to compare people’s experiences of being diagnosed with cancer in different countries.

Summary of results

This study recruited 155 people from England, Denmark and Sweden. They had all been diagnosed with either lung cancer or bowel cancer in the last 6 months.

The research team asked the people taking part a number of questions about what happened when they noticed symptoms and went to see a doctor. They found that the answers fell into 4 main stages.

Recognising symptoms
People from all 3 countries were unsure about whether they should go to see a doctor or not. They often didn’t think the symptoms they had were anything serious, especially if they generally felt well or had a healthy lifestyle.

Making an appointment
People in England reported difficulties with long waiting times for non urgent GP appointments. Some people in Denmark reported needing to convince the secretary that they needed an appointment.

In Sweden these issues were less, because they usually speak to a nurse first rather than a receptionist. They felt they could see a doctor if they wanted to. It was up to the doctor to decide if it was something serious or not.

Seeing the doctor
People from all 3 countries gave examples of:

  • being referred to a specialist quickly after just one appointment
  • going back to the doctor several times before they made a referral

More people taking part in the study from England and Denmark said their symptoms were put down to other things such as a chest infection or piles (haemorrhoids) to begin with.

After the appointment
Some people came away from their doctor’s appointment knowing what to expect next. They also knew what to do if their symptoms didn’t go away. But some weren’t sure what to do next, or when to make another appointment. They didn’t want to go back to the doctor with the same symptoms.

More people taking part in the study from England and Denmark reported having repeat appointments without really knowing what the plan was.

Conclusions
The research team concluded that there needs to be better communication between doctors and patients. People who go to see their GP should leave with a clear plan of what should happen next. They feel that this could reduce delays in diagnosis, and wouldn’t really cost any extra money.

We have based this summary on information from the research team. The information they sent us has been reviewed by independent specialists (peer reviewed Open a glossary item) and published in a medical journal. The figures we quote above were provided by the trial team who did the research. We have not analysed the data ourselves.

Recruitment start:

Recruitment end:

How to join a clinical trial

Please note: In order to join a trial you will need to discuss it with your doctor, unless otherwise specified.

Please note - unless we state otherwise in the summary, you need to talk to your doctor about joining a trial.

Chief Investigator

Professor Sue Ziebland

Supported by

NIHR Clinical Research Network: Cancer
University of Oxford
National Awareness and Early Diagnosis Initiative (NAEDI)

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Freephone 0808 800 4040

Last review date

CRUK internal database number:

12236

Please note - unless we state otherwise in the summary, you need to talk to your doctor about joining a trial.

Cara took part in a clinical trial

A picture of Cara

"I am glad that taking part in a trial might help others on their own cancer journey.”

Last reviewed:

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