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Improving Patient Experiences in Cancer Clinical Trials

Cancer clinical trials (CCTs) provide patients an opportunity to receive experimental drugs, tests, and/or procedures that can lead to remissions. For some, a CCT may seem like their only option. Yet little is known about the experiences of patient participants who withdraw from CCTs.

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 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,” says Connie M. Ulrich, PhD, RN, FAAN, Lillian S. Brunner Chair in Medical and Surgical Nursing, Professor of Nursing, Professor of Medical Ethics and Health Policy, and lead investigator. The study, “Experiences of Patients After Withdrawal from Cancer Clinical Trials” is set for publication on the JAMA Network.

The study highlighted three important points:

  • Patients exiting CCTs 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 CCT is needed to help scared and disappointed patients navigate their next steps.

Co-authors of the article include four from Penn Nursing: Anessa Foxwell, MSN, CRNP, ACHPN, GNu; Deborah Tiller; Therese Richmond, PhD, RN, FAAN, Andrea B. Laporte Professor of Nursing and Associate Dean for Research & Innovation; and Mary Naylor, PhD, RN, FAAN, Marian S. Ware Professor in Gerontology and Director of the NewCourtland Center for Transitions and Health. Other co-authors include Kathleen Knafl, of the School of Nursing at the University of North Carolina, Chapel Hill; Qiuping Zhou, of the School of Nursing at George Washington University; Cynthia Paidipati, of the School of Nursing at Loyola University; Sarah Ratcliffe, of the University of Virginia; Gwenyth Wallen and Christine Grady, both of the National Institutes of Health Clinical Center; Thomas Gordon, of the University of Massachusetts; and Victoria Miller, of Children’s Hospital of Philadelphia.

Ulrich is supported in part by a grant RO1CA196131 from the National Institutes of Health. Ratcliffe is supported in part by a grant RO1-NR014865 from the National Institutes of Health. Foxwell is supported in part by grant T32NR009356 from the NewCourtland Center for Transitions in Health.