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

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. 

 

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:

The team also interviewed people about:

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:

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:

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:

2 people reported visiting discussion forums. 

 

Of the 21 people who reported using search terms:

Overall 5 people reported using the term “lung cancer”. 

 

A total of 24 interviews were done: 

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:

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.

 

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. 

 

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. 

 

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. 

 

The team also interviewed patients and family members who didn’t use the internet. Their reasons for not using the internet included:

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. 

 

We have based this summary on information from the research team. The information they sent us has been reviewed by independent specialists (peer reviewed ) 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.