It may seem strange for a website to tell its readers that you can’t rely on the internet to tell you the facts about mesothelioma. However, a recent survey in the USA found that one third of the websites and blogs which talk about mesothelioma are providing misleading advice. Another third are providing advice that may even be harmful.
Doctors taking part in the survey reported that patients who had read misleading information on the internet were less optimistic than other cancer patients. Sometimes they refused, or thought about refusing, treatment options which the doctor was recommending. This was purely because of what they had seen on-line. That is when the information can become harmful.
Why are the websites providing the wrong advice?
The authors of the survey conclude that the advice provided on-line about mesothelioma is well-meaning. Perhaps the writer isn’t aware of recent developments in the treatment of mesothelioma. Sometimes they forget to say that a lot can depend on the stage which the illness has reached when it’s diagnosed. Maybe they don’t mention that the age and general well-being of the patient are also important.
One of the biggest reasons why websites and blogs mislead patients is because they talk about average outcomes. The average outcome of a disease is influenced by lots of things. In particular, it is affected by what are called the ‘outliers’. These are people at one end of the wide range or ‘distribution’ of patients who have been diagnosed with an illness. Typically there will be a few fairly young people at one end of the distribution, but quite a lot of frail and sometimes very elderly people at the other end. This means that the outcome for any particular person might be very different from the average.
Where can you find reliable advice on-line?
A good place to start looking for reliable advice is the website of Mesothelioma UK.
You can find out more about the survey here.
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