Perceived treatment and clinical trial access barriers in relapsed/refractory (R/R) follicular lymphoma: Findings from a national survey

Abstract

Abstract Background: Follicular lymphoma (FL) is a relapsing, incurable B-cell non-Hodgkin lymphoma with increasing treatment complexity in the relapsed/refractory (R/R) setting. Despite evolving therapies and guidelines, delivering optimal care remains challenging due to complex treatment decisions and system-level barriers. This study explored perceived barriers and facilitators to optimal R/R FL care and clinical trial access using a mixed-methods approach. Methods: The Association of Cancer Care Centers (ACCC) partnered with The Leukemia and Lymphoma Society and the Lymphoma Research Foundation to form a multidisciplinary advisory committee to support the study and evaluate results. A landscape analysis informed study design and report development. ACCC used an explanatory sequential mixed-methods design, starting with a provider survey on treatment challenges in R/R FL. The provider survey was distributed in May 2025 to multidisciplinary professionals (hematologist/oncologists, advanced practice providers, pharmacists, nurses, patient navigators, social workers, etc.) involved in the care of patients with R/R FL in the U.S. Results: A total of 203 respondents from 162 sites took the survey. Respondents were asked to select roles that applied; top selections included hematologist/oncologist (n=69), advanced practice providers (n=55), social worker (n=25) nurse (n=21), nurse navigator (n=13), and pharmacist (n=12). Using a Likert scale, respondents rated various treatment barriers; the most frequently cited as somewhat or significantly challenging were socioeconomic barriers (69%), coordinating care with other specialists, departments, or centers (55%), and managing acute toxicities (55%). While most respondents reported access to specialized treatments like CAR T-cell therapy or bispecific antibodies therapies, 30% indicated that such treatments were somewhat inaccessible or not accessible within their practice. Respondents most commonly selected financial assistance programs (67%), patient education tools (52%), and decision support tools (51%) as valuable resources/support services offered to help patients manage side effects. When coordinating care across institutions or specialists, the majority of respondents selected insurance or financial barriers (71%) followed by patient logistics (56%) and communication delays (51%). To help improve coordination, respondents selected electronic health record (EHR) integration as the most desirable opportunity to enhance care (61%), as well as specialist access (52%) and patient navigation (49%). The majority of respondents reported referring R/R FL patients to clinical trials (89%), with 46% referring to trials within their institution, 27% referring to trials within a 1-hour drive of their practice, and 16% referring to trials more than a 1-hour drive from their practice. Respondents were asked to select all applicable timepoints for discussing clinical trial participation. Clinical trials were most commonly discussed when FL was refractory to treatment (62%), and less frequently at diagnosis (42%) or during active treatment (39%). Patient willingness to participate (81%), awareness of promising therapy available only in clinical trials (79%), treatment resistance (76%) and travel/parking assistance (65%) were rated as impactful or significantly impactful factors to improve clinical trial referral. Conclusions: This study identified perceived challenges to optimal R/R FL care and clinical trial access among a group of care providers from academic and community settings, such as socioeconomic barriers, care coordination problems, and access to cutting-edge treatments and clinical trials. The results indicate the need for improved patient education, financial, emotional, and logistical support, as well as decision support. These findings will guide future initiatives to improve multidisciplinary care models and lower system-level obstacles in R/R FL care.