A new study has helped researchers understand the experiences of people who withdraw from clinical cancer trials.
Cancer clinical trials (CCTs) provide patients with an opportunity to receive experimental drugs, tests, and/or procedures that may lead to remissions. Such opportunities can be a great benefit for those who took part, but there is little known of the experiences of participants who withdraw from CCTs.
To address this, a first-of-its-kind study from the University of Pennsylvania School of Nursing (Penn Nursing) was conducted to better understand the post-trial needs of these patients and define responsible transitions when patients exit CCTs.
“Understanding the post-trial needs of patients with cancer and their families represents a measure of ethical respect of the many contributions that patients with cancer make to advancing our scientific knowledge and finding treatments that save lives,” said the study’s lead researcher, Connie M Ulrich, the Lillian S Brunner Chair in Medical and Surgical Nursing, professor of nursing, professor of medical ethics and health policy.
The study revealed three important areas:
- Patients exiting CCTs feel intense symptoms, emotions, and awareness that their life spans are short and options seem limited.
- The limited discussions with patients who are exiting on their immediate post-trial care needs can result in many feeling that there is no clear path forward.
- Good communication that deliberately includes attention to post-trial needs throughout the CCT is needed to help scared and disappointed patients navigate their next steps.
The study is set for publication on the JAMA Network.
Source: University of Pennsylvania