As medical professionals, we often wonder why it's so hard to accrue patients to clinical trials. As a social worker running support groups for patients and caregivers, I've found that the question of clinical trials is a deeply personal one, affected by so many factors.
Support groups are incredible communities. People dealing with similar issues come together to share their thoughts and feelings, their experiences, their advice, their support. Particularly in groups where members have developed a solid rapport with one another and with the leader, complex issues of treatment decision-making, and the emotional and thought processes that go into those decisions, are often explored. Sometimes in running groups, we talk about the "hot topics" that tend to generate vigorous discussion.
Clinical trials are a definitely a hot topic. A typical exchange in a group might go something like this (the quotes in bold are taken from actual support group discussions).
"Of course I'd do it, I'd do it in a heartbeat, the top guys are running those things!" Some patients are motivated by the access that trials can give them to leading healthcare teams. Even if they are not being treated directly by the "top doctor," just knowing that a "top doc" is involved in some way can make the trial appealing. For some patients, a clinical trial means moving their care to a comprehensive cancer center in their area, affording them a proximity to specialists that they may not otherwise have accessed.
"Those people don't care who you are, they don't even know your name, you're just a number to them. It's all an experiment, you don't know if they're helping you or hurting you!" Memories of Tuskegee and other clinical trial abuses still haunt many segments of our population. Just as the idea of a leading medical facility or "top doc" can appeal to some, for others, the fear of exploitation permeates any decisions about potential participation in a trial.
"It might not be as personal as some places, but ('well-known cancer center') is where you have to go because you want the newest stuff, I mean, the stuff that might work!" Access to the newest research and treatment options (including experimental options) can be a powerful incentive to some patients, particularly when disease is progressing through the standard treatments.
"But, who the hell knows what else is going to happen? It's bad enough with the treatment I've got going, who knows what might happen. I met with them and everything, but the nurse already told me that they don't know what's going to happen!" For some patients, given the uncertainty surrounding potential side effects and outcomes and blind and randomized trials, the unknowns about which treatment they will actually be receiving can be more than they feel prepared to handle.
"No way, I can do that, I'm back and forth to that hospital every other day already!" For some, more intensive follow-up requiring a greater time commitment and potentially higher costs can be a deterrent to participation. However, for others, the greater scrutiny is comforting and gives trial participation strong appeal.
"I've thought about the pluses and minuses a lot these past few days. My wife is on the fence, but I think I'm going for it. It might not even make a difference for me, but maybe it will make a difference for someone else, you know what I mean?"
Ideally, treatment discussions would always include mention of the clinical trials that are available as options to any given patient. If we want to understand our patients' treatment decisions, asking for their thoughts and questions about trial participation can be a great start to addressing the fears and concerns (even misunderstandings) that might be lurking. It can also give us a window into the reasons why they might do it and an opportunity to support them in their goals.