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Talking with Oncology Patients About Clinical Trials

October 23, 2017 | Lillie's Corner | Clinical Trials
Featuring:
Lillie D. Shockney, RN, BS, MAS, ONN-CG
Lillie D. Shockney, RN, BS, MAS, ONN-CG
Program Director and Co-Founder, AONN+; University Distinguished Service Professor of Breast Cancer, Departments of Surgery and Oncology; Administrative Director, The Johns Hopkins Breast Center; Director, Cancer Survivorship Programs at the Sidney Kimmel Cancer Center at Johns Hopkins; Professor, JHU School of Medicine, Departments of Surgery, Oncology, Gynecology & Obstetrics - Baltimore, MD

One of the best roles a nurse navigator can incorporate into her daily routine when seeing a newly diagnosed patient is to begin educating the patient about clinical trials. All too often, patients associate the phrase “clinical trials” with “experimentation,” and, of course, this is not the case. As a result, patients can miss opportunities to participate that, in fact, may be of specific benefit to them. Clinical trials are also not limited to chemotherapy; this too is a myth.

As a screener for clinical trials, you will be able to determine if a newly diagnosed patient meets the criteria for participation. You are also in an excellent position to determine if the timing is right to discuss a potential clinical trial. When a patient is very distraught, it is not the time for such a significant and complex discussion. The answer would likely be “no, I don’t want to hear about a trial,” merely because the patient is feeling too anxious and overwhelmed at that time. However, arrange for the research nurse to follow up with the patient in a few days, perhaps when the patient is returning for additional tests or appointments when he or she is calmer and more able to listen to the pros and cons of participating. If you have cancer survivor volunteers as part of your support system for new patients, there is also the ability to have a survivor volunteer talk with a new patient about their choice to engage in clinical trial participation and how and why they made that personal choice.

Without patients participating in clinical trials, we will never make progress in the diagnosis and treatment of any types of cancer. Clinical trial participation nationally is only a small percentage of patients too, when most patients are a candidate for some type of participation, even if it is merely obtaining a blood sample, or approving that a piece of their tumor, after surgical removal, be studied for specific clinical and biological purposes.

As a cancer survivor myself, I make a point of telling newly diagnosed patients that I sought out clinical trial options and continue to do so as a long-term (25-year) survivor. Each time a patient agrees to participate—to whatever degree that may be—it helps scientists to learn more about cancer, how to treat it, and hopefully one day how to prevent it.

For patients with advanced/metastatic disease, their goals of participation can be quite different. They may have exhausted other treatment options and are interested in participating in what truly is experimental therapies—phase 1 clinical trials. Such trials are designed to test the drug for toxicity. It may benefit the patient, but the odds are it may not. This new research, however, will definitely make a difference for future generations facing the same medical situation and for those who will lose their life to their cancer—that level of participation can be part of their legacy.

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