One patient advocate explained how patients with renal cell carcinoma can query about clinical trials and what they need to know about them to do so.
BY Kristie L. Kahl
Patients with kidney cancer should be thinking about clinical trials at every step of their journey, not just after a line of therapy has stopped working for them, according to Deborah Maskens.
“Don't think for a minute that that opportunity (to join a clinical trial) was long ago, and you can't find a trial,” added Maskens, who is the founder of Kidney Cancer Canada and a board director for the International Kidney Cancer Coalition. “(Trials can vary) from the earliest detection to later line (therapies), at least for an observational trial, we need to learn from every single one of you.”
Only 3% of patients with cancer in the United States participate in cancer trials, she added. “I would love for that 3% to be 10% or 15%, because then we would all get the answers that we need faster.”
A patient herself, Maskens was diagnosed with kidney cancer in 1960. Her localized kidney cancer has since recurred since her original diagnosis at the age of 14, returning as metastatic disease at the age of 36. She is now 59 years old, has undergone 10 surgeries, and advocates to change the way patients think about clinical trials.
To start, she had three lessons learned from her own experience that she wanted to share with the audience of patients and caregivers at A Vision of Hope: A Kidney Cancer Educational Symposium,
hosted by the Judy Nicholson Kidney Cancer Symposium and Penn Medicine Abramson Cancer Center.
First, she said, “your doctor does not know everything,” emphasizing the need for patients to ensure they receive care under a multidisciplinary approach: medical experts of various specialties, nurses, psycho-social support, general practitioners, an advocacy organization, and the patient themselves.
Maskens also highlighted the importance of shared decision making. “You can practice by introducing yourself to your physician to say, ‘I'm the kind of patient who likes to be involved in my treatment decision,’” she explained. “And if the doctor isn't okay with that, then maybe they are not going to be a good team (for you).”
In addition, she noted that the patient’s role, or their caregiver’s, is to be their own “information broker.” To do so, Maskens recommended for individuals to keep a file or binder with everything in one place and, from time to time, summarize the timeline of appointments, updates, scans, etc. With this, she added that patients should prepare for their appointments, including information needed since their last visit and questions with next steps ahead.
With these lessons learned, she said, patients can better equip themselves with information to discuss the option of a clinical trial with their health care teams. “I'd like you to think about trials as being an opportunity for you to leap-frog into the future.”
By doing this, patients have the chance to “access tomorrow’s treatments today,” while also receiving phenomenal care.
So, why don’t more patients join clinical trials? Maskens credits this to the fact that physicians may not know about all of the available options outside of their institution. For example, there are more than 250 kidney cancer studies that are currently ongoing in the U.S.
To help with this process, Maskens offered questions to ask, including:
- What is the primary question this trial seeks to answer?
- What is the standard of care outside of the trial, and is that an option in one of the trial arms?
- What phase of the clinical trial is it, and what results were previously found?
- What are the side effects expected from each arm?
- What will the trial measure?
- Will it record my quality of life?
- What extra burdens might I face?
- What are the risks?
“There is no force in medicine more positive and powerful than the self-advocating patient,” Maskens concluded. “So, you are the force that you need in your own care. And don't underestimate that for a minute.”