November 5, 2020
Survey of Heart Valve Patients Shows Need for Increased Awareness About Clinical Trial Enrollment
November 5, 2020—Most heart valve patients are not very aware of clinical trials, but most patients would consider enrolling in a clinical trial, according to results of a nationwide survey announced by HeartValveSurgery.com, an advocacy group for patients with heart valve disease.
Conducted online October 13-19, 2020, the survey included 1,157 patients previously diagnosed with aortic, mitral, tricuspid, or pulmonary valve disease. More than 72% of survey respondents were age ≥ 60 years.
HeartValveSurgery.com reported the following data from the survey:
- 73% of heart valve patients are “not very aware” of clinical trials
- 73% of heart valve patients surveyed cannot name and describe one clinical trial
- 90% of preoperative patients want to learn about clinical trials
- Only 4% of patients surveyed have participated in a heart valve clinical trial, but 59% of heart valve patients would consider enrolling in a clinical trial
The survey also found that 87% of heart valve patients have never visited ClinicalTrials.gov, the largest clinical trials website managed by the US National Library of Medicine. Heart valve patients often do not know how to learn about or enroll in a clinical trial.
“Educated patients are empowered patients,” commented Adam Pick, patient advocate and HeartValveSurgery.com founder, in the announcement. “As a result of this survey, HeartValveSurgery.com will develop new educational initiatives and technologies to address patient needs specific to clinical trials.”
The announcement noted that actionable solutions for patient needs, specific to clinical trial education, were also revealed in the survey. The top three educational resources requested by heart valve patients are:
- Comprehensive websites with detailed information about clinical trials (86%)
- Educational videos with doctors describing clinical trials (63%)
- Downloadable brochures about clinical trials (47%)
Additional findings from the survey are included in a complimentary report, “Heart Valve Clinical Trials: Missed Opportunities for Patient Awareness & Enrollment,” published by HeartValveSurgery.com.
Marc Gillinov, MD, Chair of the Department of Cardiac Surgery at the Cleveland Clinic in Cleveland, Ohio, commented in the announcement, “The fact that 73% of heart valve patients have little visibility to clinical trials is a missed opportunity. Patients deserve access to the information that can optimize their care—including clinical trials.”
Michael Mack, MD, added, “This survey revealed valuable insights about patient perceptions specific to clinical trials. Not only do patients want to learn about and consider enrolling in clinical trials—patients know why, how, and where they want to access that information.” Dr. Mack is Chairman of Baylor Scott & White Health Research Institute in Dallas, Texas, and the national coprincipal investigator of the PARTNER 3 clinical trial of transcatheter aortic valve replacement using the Sapien 3 valve (Edwards Lifesciences).
Patrick McCarthy, MD, stated, “Thanks to this survey, we have new evidence that heart valve patients have a deep interest in learning as much as they can about clinical trials. These survey findings indicate that a wider understanding of relevant clinical trials could stimulate patient enrollment, which is often considered the Achilles’ heel of clinical trials.” Dr. McCarthy is Executive Director at Northwestern Medicine Bluhm Cardiovascular Institute in Chicago, Illinois, and the national coprincipal investigator of the MitraClip REPAIR MR trial of the MitraClip (Abbott) for patients with severe mitral regurgitation.