Cancer Resources > Cancer News > 2004 > April

Cancer trial participants rarely told of results

Merritt McKinney

Last Updated: 2004-04-20 16:41:37 -0400 (Reuters Health)

NEW YORK (Reuters Health) - Cancer patients who participate in clinical trials are often left in the dark about the results of the studies, according to a new report. Although nearly 80% of the physicians and nurses polled thought that most participants should be informed of trial results, most of the treatment providers said they rarely did so.

"Most clinicians indicated that they would be willing to offer results in the future to patients who have participated in trials," said lead author Dr. Ann H. Partridge of the Dana-Farber Cancer Institute in Boston. "However, they had several concerns, including that such a process might increase patient anxiety, increase the costs of the already costly clinical trials process and that patients would not fully understand the meaning" of the results, she said.

Trial participants are routinely informed of results only when the findings will affect their care. For instance, all women participating in a recent HRT trial were notified once the investigators identified increased risks associated with treatment. But when study results do not have a direct impact on patients' treatment, they are not routinely informed of the results.

That may be changing, however, as patient advocates and some clinical researchers assert that offering results recognizes patients as partners in the research process, according to Dr. Partridge.

To gauge health professionals' attitudes on the subject, Dr. Partridge's group surveyed almost 800 physicians and nurses involved in cancer clinical trials. About 79% of respondents said that most patients should be offered study results, the researchers report in the April 21st issue of the Journal of the National Cancer Institute. A majority also thought most patients would want to know the results and are unlikely to be harmed by being told.

Despite these attitudes, 62% of respondents said that they gave results to patients less than 20% of the time. Although most reported a willingness to share results with patients in future studies, about 16% said that a requirement to do so would discourage them from enrolling patients in clinical trials.

The leading concerns of health professionals were the potential emotional impact on patients; the possibility that patients would not understand the results; and the money and time it would take to inform patients.

To address these concerns, Dr. Partridge's group is planning a large national trial to study the process of giving results to patients and the effect this information has on them.

"Communication with patients following participation in a clinical trial is one small, though important, piece of the overall care of patients who participate in trials," Dr. Partridge said. "Improvements in this area may improve patient satisfaction with care as well as the clinical trials process."

J Natl Cancer Inst 2004;96:629-632.

Copyright © 2010 Reuters Limited. All rights reserved.
Republication or redistribution of Reuters content, including by framing or similar means, is expressly prohibited without the prior written consent of Reuters. Reuters shall not be liable for any errors or delays in the content, or for any actions taken in reliance thereon. Reuters and the Reuters sphere logo are registered trademarks and trademarks of the Reuters group of companies around the world.