A study to find out the role of information sources used before a diagnosis of lung cancer

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Cancer type:

Lung cancer
Non small cell lung cancer
Small cell lung cancer

Status:

Results

Phase:

Other

This study looked at how people used websites to find information about their symptoms before a diagnosis of lung cancer.

It was open for people to join between July 2014 and March 2015.

More about this trial

Some people use the internet to find out about symptoms of lung cancer before going to their doctor. 
 
The researchers wanted to know more about how this information influenced their decision to go to their doctor. And how people rated the information they found.
 
The main aims of this study were to:
  • identify the information sources people used
  • find out how they rated the information sources
  • find out how it influenced their decision to see their doctor

Summary of results

The study team found that the role of the internet is limited before a diagnosis of lung cancer. But this is likely to increase in the future as people use the internet more and want to be more informed about their health and wellbeing. 
 
About this study
The researchers asked people to join the study if they had been diagnosed with lung cancer in the past 6 months. They included people who used the internet and people who didn’t. 
 
Everyone completed a questionnaire. The questions asked:
  • whether they, a family member or friend used the internet before their diagnosis to help them understand lung cancer or their symptoms 
  • which symptoms they had before being diagnosed 
  • about the details of any internet searches done before diagnosis, this included who did the search, what terms they used, the search engine used and websites they looked at
  • about their usual use of the internet
  • personal information such as age, sex and education level 
The team also interviewed people about:
  • their symptoms and what encouraged them to seek help and any barriers to seeking help
  • web searches before diagnosis and what effect it had on them seeking help
  • any reasons for and against using the internet before a diagnosis
Results
122 agreed to join the study and completed the questionnaire. Of these 9 people didn’t have symptoms before diagnosis so the team ruled them out. 
 
Of the remaining 113 people:
  • 58 people (51.3%) had internet access 
  • 69 people (61.1%) had used the internet at some point
  • 26 people (23%) didn’t own a device to access the internet

Use of internet before diagnosis
Of the 113 people, 23 (20.4%) reported that they, a family member or friend had searched online for symptoms before their diagnosis. 
 
Of the 7 people who searched themselves, 4 people had the help of a family member or friend. Another 16 family members or friends did the search themselves on behalf of the person. A total of 20 family members or friends were involved in doing the search.  
 
In some cases, more than 1 person reported doing the web search. This could have been the person themselves and other family members for example a spouse and a grandchild. This meant a total of 31 people used the internet. They were:
  • 7 patients
  • 7 spouses or partners
  • 12 sons or daughters
  • 2 sons in law or daughters in law
  • 1 grandchild
  • 1 nephew
  • 1 friend
Web searches
Of the 23 people who used the internet before diagnosis, 20 people said they used Google. The rest didn’t know which search engine they used.
 
The team asked people which websites they visited. They found that:
  • 19 people visited NHS Direct 
  • 7 people visited WebMD 
  • 5 people visited patient.co.uk
  • 2 people visited Yahoo Health
  • 1 person visited Netdoctor 
2 people reported visiting discussion forums. 
 
Of the 21 people who reported using search terms:
  • 8 people used symptoms such as “persistent cough” and “hoarse voice”
  • 5 people used possible causes or conditions such as “throat cancer” and “stopping smoking”
  • 3 used early test results before getting a definite diagnosis for example “pleural effusion”
  • 5 people used a combination of the above for example “stomach cancer and weight loss”
Overall 5 people reported using the term “lung cancer”. 
 
Interviews
A total of 24 interviews were done: 
  • 10 with patients only
  • 7 with a family member only
  • 7 with both patient and family member together
The team grouped the interviews matching them to certain time periods in the process of deciding to see a doctor. The 3 periods they used, were the person:
  • hadn’t yet decided to go to the doctor (Appraisal Interval) 
  • had decided to go to the doctor (Health-seeking Interval)
  • has been diagnosed (Diagnostic Interval)
Appraisal Interval
During this interval people used online information to identify possible causes of symptoms. The information they read caused some people to view their symptoms as more severe than first thought. And some became convinced they had lung cancer. 
 
For 1 woman the information she read reassured her that the symptoms described by her husband wasn’t as serious as first thought. And that the symptoms were most probably due to him having stopped smoking.
 
Health-seeking Interval
During this interval several people reported that they used the internet to help make the decision to see a doctor or not. Others said that it didn’t affect their decision as they had already decided to see someone before going online. 
 
Diagnostic Interval
During this interval some people reported they went on to the internet for information after seeing the doctor several times without getting a diagnosis. They did so because they felt dissatisfied with the advice from the doctor. They used the web information to challenge the doctor and push to get tests done. 
 
Other times people used the internet
Others reported they went online in the period after having tests, been told the results but not what the results could mean. During this uncertain time they used the internet to understand medical terms, the test results and identify possible causes. 
 
People who didn’t use the internet
The team also interviewed patients and family members who didn’t use the internet. Their reasons for not using the internet included:
  • a concern over unnecessary worry and fear
  • preferring not to know
  • a belief the symptoms were unimportant
  • being unfamiliar with, or not interested in using, the technology 
Conclusion
The team concluded that using the internet before getting a diagnosis is limited. But this could increase in the future as people become more familiar with using the internet to find out about their health. 
 
They suggest that this information could influence a person’s pathway to getting a diagnosis. And the internet might hold the way to reduce the time to getting a diagnosis. This is something that should be looked at in another study. 
 
Where this information comes from
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

Ms Julia Mueller

Supported by

Medical Research Council (MRC)
NIHR Clinical Research Network: Cancer
University of Manchester

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Freephone 0808 800 4040

Last review date

CRUK internal database number:

12193

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

Wendy took part in a new trial studying the possible side effect of hearing loss

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"I was delighted to take part in a clinical trial as it has the potential to really help others in the future.”

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