Patients with glioblastoma may lack easy access to clinical trials and off-label treatments, despite showing an interest in learning more about them.
Patients with glioblastoma (GBM) may lack easy access to clinical trials and off-label treatments, according to survey results from OurBrainBank — a patient-centered nonprofit designed to move the disease from terminal to treatable.
Moreover, the survey found that, aside from the fact that patients expressed an interest in being offered clinical trial participation, only 28.3% of respondents were able to find a trial they were eligible for.
“As a surgeon, I'm frustrated at how hard it can be for patients and caregivers to navigate the complex world of clinical trials. This survey reaffirms my concern that there is a broad gap between what people affected by GBM want and what is available to them,” Daniel A. Orringer M.D., assistant professor of neurosurgery at the University of Michigan, member of OurBrainBank's medical advisory committee and one of the survey designers, said in a press release.
The social media-based survey included 162 responses — of which 33.5% were caregivers and 66.5% were patients. The majority of responders had received their diagnosis over the last four years.
In total, 57.2% of patients were never offered a clinical trial. Of the 39.0% who were, most often, the suggestion came from a neuro-oncologist and also at either the time of diagnosis (36.1%) or post-recurrence (32.8%).
This wasn’t without asking, of course: 77.4% reported they had asked about clinical trial participation.
Of those who did not ask, responders noted it was either because they felt too overwhelmed during the appointment, didn’t know how to ask, expected their physician to make the recommendation, were discouraged by their doctor, or felt their physician was unresponsive to questions in general.
Aside from speaking with their physician, 71.8% of responders searched for clinical trials on their own. However, only 27.8% were actually able to find a trial they were eligible for. The most recent published estimates suggested that under 10% of patients with GBM enroll in clinical trials — a perception that was also carried across responders.
When asked if their hospital offered clinical trials, 47.1% responded yes, 21.3% no and 31.6% did not know. With that, only 42.4% of patients were encouraged to contact another treatment center.
Lastly, when asked if their doctor had offered them an off-label medication outside of a clinical trial, 79.6% said no. Those who had, however, only received such help after recurrence of their disease had occurred.
These findings also come on the heels of the ongoing debates surrounding investigational treatments given under the Right to Try Law and the Food and Drug Administration’s added effort with the Expanded Access Program.
“If I hadn't gone on a clinical trial early on, I doubt whether I'd be here today,” Meredith Moore, board member of OurBrainBank and a 14-year GBM survivor, said in the release. “There are thousands like me who deserve the same chance. OurBrainBank is determined to use this survey to bridge the gap between trials and patients."