Perceptions and Practices of Clinical Trial Enrollment Among Patients with Non-Hodgkin Lymphoma, Caregivers, and Providers

BACKGROUND: Clinical trials are critical to evaluate new therapies in non-Hodgkin lymphoma (NHL) and to enhance patient outcomes; however, accrual to these studies remain low.¹ Multiple patient- and healthcare provider (HCP)-related barriers contribute to the persistently low rates of trial participation.² Low enrollment in cancer clinical trials result in delays in the advancement of cancer research, as well as an escalation in the cost of developing and disseminating effective treatments.² HCPs play a critical role in advising, motivating, and recruiting patients to clinical trials. We designed a patient-provider tethered educational initiative in collaboration with the Leukemia and Lymphoma Society and BlackDoctors.org that examined real-world experiences and perceptions of clinical trials among HCPs, patients with NHL, and their caregivers.

METHODS: Two educational activities were designed: The 1-hour patient/caregiver activity was broadcasted on CancerCoachLive.com in February 2023 and featured a multidisciplinary NHL expert panel of two hematologists/oncologists and a nurse practitioner. This program addressed the value of clinical trials, diverse representation, novel therapies under investigation, and real-world experiences from a patient panel. The complementary 1-hour HCP program was hosted on OMedLive.com in March 2023 and featured the same multidisciplinary NHL expert faculty panel and included pre-recorded patient interviews and an interactive live Q&A. The online programs remain on-demand for one-year post-activity. Attitudes toward clinical trials were assessed in both activities (patient and HCP). Additionally, the HCP survey assessed barriers and challenges managing patients with NHL and intent to modify treatment plans post-program were also assessed.

RESULTS: To date, 1,706 HCPs and 2,119 patients with NHL or their caregivers participated in this educational initiative. Of the HCPs, 78% were hematologists/oncologists, 15% practice at an academic medical center, 26% practice at a community hospital, and 65% manage an average of 15 patients with NHL per week. Of the patients/caregivers, 72% identified as White, 17% were Black/African American, 7% were Hispanic, 4% were Native Hawaiian/Pacific Islander, and 67% were ≥65 years old. Most of the participants (89%) in the patient/caregiver activity were ≥55 years old, 67% were >65 years. At the time of the assessment, 31% of patients were receiving watch and wait, 15% were in remission, 15% had recurrent/relapsed disease, and 12% reported having had newly diagnosed NHL.

Most patients (93%) indicated that they have not participated in a clinical trial but were open to discussions with their HCPs. Patients and their caregivers expressed a high degree of interest in clinical trials. Specifically, 78% of respondents indicated that they would participate in a clinical trial if they were eligible. There were misalignments in patient-provider perceptions regarding the top patient concerns when considering participation in a clinical trial. Patients or their caregivers cited potential side effects (50%), associated costs of treatment (20%), and transportation/lack of time or resources (20%) as their top concerns related to clinical trial participation. HCPs cited fear of the unknown (34%), potential side effects (27%), and potential associated costs (15%) as their top concerns. Post-activity, 64% of patients or their caregivers indicated that they were confident in discussing clinical trials with their HCP. HCPs reported that the most common barrier to patient enrollment in clinical trials they were motivated to address at their institution post-activity were lack of clinical trials at their institution or geographic region (51%) and patient lack of interest (28%).

CONCLUSIONS: These data from large groups of HCPs, patients, and caregivers provided valuable insights into patient, caregiver, and provider perceptions of clinical trials and strong willingness on the part of patients with NHL to participate in trials. Importantly, we found that targeted educational interventions can enable most patients and caregivers to feel confident in discussing clinical trials with their HCP and can motivate HCPs to increase clinical trial opportunities for diverse populations of patients with NHL.

1. Unger JM, et al. Am Soc Clin Oncol Educ Book. 2016; 35:185-198.
2. Ford JG et al. Cancer. 2008; 112:228-242.