Cancer clinical trials provide patients an opportunity to receive experimental drugs, tests, and/or procedures that can lead to remissions. For some, a clinical trial may seem like the only option; however, little is known about the experiences of patient participants who withdraw from such studies.
Now, a first-of-its-kind study from the University of Pennsylvania School of Nursing (Penn Nursing) helps to clarify the post-trial needs of these patients and define what constitutes responsible transitions when patients exit cancer clinical trials.
“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,” says lead investigator Connie M. Ulrich, PhD, RN, FAAN, chair of medical and surgical nursing for Penn Nursing. Ulrich is also a professor of nursing and of medical ethics and health policy. The study is set for publication on the JAMA Network.
The study highlights three important points:
- Patients exiting cancer clinical trials feel intense symptoms, emotions, and awareness that their life spans are short and options seem limited.
- Limited discussions with exiting patients about their immediate post-trial care needs leave many feeling that there is no clear path forward.
- Good communication that deliberately includes attention to post-trial needs throughout the cancer clinical trial is needed to help scared and disappointed patients navigate their next steps.
Coauthors with Ulrich on the study came from Penn Nursing, the School of Nursing at the University of North Carolina at Chapel Hill, the School of Nursing at George Washington University, the School of Nursing at Loyola University, the University of Virginia, the National Institutes of Health Clinical Center, the University of Massachusetts, and Children’s Hospital of Philadelphia.
Edited by Gary Cramer