Why aren't Heart Failure Patients Participating in Clinical Trials? Results from a Patient Centered Survey

Introduction Recruitment is critical to the success of clinical trials (CT). Despite heart failure (HF) being a highly prevalent disease, recruitment rates in HF CT are low. Understanding why HF patients are not participating in CT may help overcome barriers to participation and optimize recruitment. We sought to identify reasons why HF patients may not be participating in CT. Methods We administered an 18-question survey to participants in Mediguard, an IQVIA global online patient community that includes 239,913 U.S. participants who are consented for research. The survey was initiated on Jan 4, 2018 and closed on Jan 24, 2018. Patients with a diagnosis of HF who were willing to complete the questionnaire qualified for the study. Results 199 patients qualified and 78 completed the questionnaire. The median age of respondents was 67 years (IQR 59, 72), and 68% were female. Of the respondents, 94% had never participated in CT, 86% were not aware of any previous or current HF CT, and only 6% were involved in HF patient advocacy groups. The most frequent reason that respondents gave for not participating in CT was because they were not told about CT by their provider ( Figure ). Of the 5 respondents who had participated in CT, the most frequent response (2/5) about the best part of being in CT was additional support from a health care team. The most frequent response (3/6) for the worst part of being in CT was not receiving study results when the trial was completed Conclusions Most HF patients participating in this survey had not participated in CT, were unaware of potential CT, and had not been approached by a provider to participate in CT. These results suggest a general lack of awareness of CT among HF patients and providers. Potential strategies to optimize recruitment in HF CT may include dedicated time, budget, and resources to educate patients and providers about CT and providing results to participants when CT are completed.