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Background: Clinical trial participation in the United States remains low, hampering development of and access to novel therapies. To assist patients and their oncologists with identifying relevant and available blood cancer clinical trials and reducing enrollment barriers, The Leukemia & Lymphoma Society created its Clinical Trial Support Center (CTSC), a free, telephone-based service led by nurse navigators.
Objectives: To understand patient- and caregiver-reported perceptions and experiences with this navigation service.
Methods: Eligible participants were English-speaking, adult blood cancer patients or caregivers who resided in the United States or Canada and had a telephone interaction with the CTSC between May 2018 and April 2019. A 53-item survey assessed demographics, clinical characteristics, experiences, satisfaction, and enrollment outcomes. Interviews were conducted with a subset of survey respondents to capture individual narratives.
Results: Of 474 eligible patients/caregivers, 131 completed the survey (28% response rate). Most patients/caregivers reported contacting the CTSC to identify a trial they might be eligible for (81.7%), for general information about clinical trials (78.6%), about a trial recommended by a healthcare provider (21.4%), or one found through another source (19.1%). In addition to seeking help with identifying trials and learning about trials, patients/caregivers reported discussing with the nurse navigator insurance/coverage issues (25%) and how to talk with their healthcare provider about trial participation (24%). More than 93% of respondents reported that the nurse navigator gave them the information and support needed to make an informed decision about trial participation. After speaking to a nurse navigator, nearly 29.6% reported enrolling in a trial; the most common reasons for nonenrollment were that their doctor did not recommend it (33.7%), not eligible for any existing trial (30.3%), no trial available at a convenient location (24.7%), and chose a different type or plan of treatment than offered by trial(s) (23.6%). Interview respondents (n=10) described how the navigation enhanced their sense of control over the treatment decision-making process.
Conclusion: Amid an overwhelming treatment landscape and continued low clinical trial enrollment rates, this clinical trial navigation service effectively provides blood cancer patients and caregivers support with identifying relevant trial options and facilitating enrollment if the patient so chooses in collaboration with their healthcare team. Further inquiry is needed to understand how to integrate independent navigation programs such as this directly into clinical workflows so that more patients and oncologists can be assisted, especially among patients from groups underrepresented in clinical trials.
