Patients want to know results of their clinical trials

Although an overwhelming 98% of cancer patients wanted to know the results of the clinical trial they took part in, there is currently no standard way of conveying the information. The onus is usually placed on the patient to find out the results from their doctor. Over 1,400 people with cancer took part in a new study to determine the best way of telling patients about their clinical trial results, the findings of which were announced today at the 5th European Breast Cancer Conference (EBCC-5).

The study by the TACT (Taxotere as Adjuvant ChemoTherapy) trial management group, questioned UK patients involved in clinical trials and asked if they would like to be notified of the results when available, and if so, how they would like the results conveyed. Advantages and disadvantages of each method were explained. A similar survey of health care professionals was conducted simultaneously.

Stella Kyriakides, Co-Chair of EBCC-5 and past president of Europa Donna comments, “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.”

The findings revealed that posting trial results directly to patients’ homes was the preferred way to receive the information, with almost half indicating this method. Forty percent wanted to be told in person by a hospital doctor or nurse, with the rest preferring to be telephoned with the results.

The study found that health professionals, in contrast, favoured delivery of trial results through the patients’ hospital – around 80% thought patients should receive results this way. Further, 42% of patients thought that the next of kin of deceased patients should be given the relevant results, however only 27% of healthcare professionals believed that this was a good idea.

It is often many years before the results of a clinical trial are available to patients, if at all. Large trials can take up to ten years to analyse and publish.

As clinical trial data is invariably published in medical journals the language is often complicated and full of medical terms. In fact 96% of health professionals surveyed requested that the information about trials be disseminated into lay language, for patients to understand.

In May 2004, the European Union introduced a Clinical Trials Directive. This covers many aspects of running clinical trials in Europe, including improving the reporting of clinical trials. It is hoped that the flow of clinical trial information will improve and guidelines implemented so that patients automatically gain trial results, in a format that they and their relatives will understand.