Almost all patients who take part in cancer clinical trials want to know the results of the study, and most think this information should be made available by hospital staff, according to a new survey.

But at present the onus is usually placed on the patient to find out the results from their doctor, and there is currently no standard way of conveying the information.

A survey of 1,400 cancer patients taking part in a chemotherapy trial found that an overwhelming 98% wanted to know the results, with 48% preferring to receive notification by mail, and 40% wanting to be told by a doctor or nurse.

Meanwhile, 80% of health professionals felt that patients should learn the results from hospital staff, with almost all saying these should be provided in easy-to-understand terms. It is not enough to rely on patients becoming aware of the results after they appear in medical journals, particularly as it can be years before the data is analysed and published, the survey said.

As with the patients, around half the healthcare professionals favoured delivery by post.

Stella Kyriakides, co-chair of EBCC-5 said: “Some breast cancer patients take part in a clinical trial and are never told the results. It is important that patients are not forgotten after they have participated in a study that ultimately improves cancer treatment for all patients.”

42% of patients thought that the next of kin of deceased patients should be given the relevant results, but only 27% of healthcare professionals believed that this was a good idea.

The findings were announced last week at the 5th European Breast Cancer Conference (EBCC-5) in Nice, France.

Emotional distress

But the results of the survey run counter to arguments published in the April 1 issue of the journal Cancer by Dr Maurie Markman, vice president of clinical research at the University of Texas MD Anderson Cancer Center.

Markman believes there is sometimes little value in providing stark trial data to cancer patients – such as the mortality rate over time in a trial – as this can create worry and fear, even if the individual is doing well.

He would prefer the possible findings of a trial to be discussed before enrolment, to make it clear that the results may have no relevance to their own illness, to give them an opportunity to opt out of receiving data if they wish.

“Although it is important to recognise the right of research subjects to be provided with information regarding the results of completed clinical trials in which they have been participants, there are legitimate reasons why a patient may not want to know the ultimate outcome of the study,” says Markman.