When the hope goes: Talking with patients after withdrawal from cancer clinical trials

“We often focus on recruitment, which is important in itself for beginning any research trial, but less is known about the end of the trial and what is important to patients and families at that point in the research process — a critical time point we tend to forget," said Connie Ulrich.

To understand why individuals withdraw from cancer clinical trials, Connie Ulrich and colleagues at UPenn conducted a study in which they interviewed 20 individuals who withdrew from their clinical trials. Ulrich spoke to Healio about the study's findings.

From Healio:

Healio: What inspired you to undertake this study?

Ulrich: As a nurse bioethicist, I have been interested in ethical issues related to research participation, especially recruitment and retention. Being diagnosed with cancer is a very stressful time for patients and their families. These patients have to make very difficult decisions about their care, and research is one option they may consider, although we know that less than 5% of adults participate in cancer clinical trials or clinical trials in general. This study was part of a larger study, one of the aims of which was to talk to participants who were withdrawn or who withdrew from their trials, to understand their experience.