Bridging gaps in relapsed/refractory follicular lymphoma care: Perceived barriers to treatment and clinical trial access.

Abstract

e13547 Background: Despite expanding therapeutic options and clinical guidelines for relapsed/refractory follicular lymphoma (R/R FL), optimal care delivery remains challenging due to complex treatment decisions and system-level barriers. This study explored perceived barriers and facilitators to R/R FL care and clinical trial access from both provider and patient perspectives. Methods: Using an explanatory sequential mixed-methods approach, the Association of Cancer Care Centers (ACCC), in partnership with patient advocacy organizations, convened an expert advisory committee to support study design. Two focus groups and 6 key informant interviews were conducted May-June 2025. One focus group and 2 interviews included patients with R/R FL, caregivers, and patient advocacy representativesother focus group and remaining interviews included multidisciplinary healthcare professionals (HCP) involved in R/R FL care in the U.S. Qualitative data were stratified by stakeholder group and analyzed thematically. Results: Focus group participants (n = 25) included HCPs (n = 12), patients (n = 8), advocacy representatives (n = 3) and caregivers (n = 2). Interviews included HCPs (n = 4) and patients (n = 2). Providers prioritized individualized treatment sequencing, assessment for transformation, and use of newer therapies when feasible. Clinical trials were viewed as important but limited by geography, health literacy, and eligibility criteria, with variability in when trials were introduced across treatment lines. Insurance and geographic barriers were cited as the most common challenges to timely, guideline-concordant care. Providers emphasized shared decision-making (SDM), patient education, and coordination between community and tertiary centers as best practices. Yet, patients perceived varying degrees of SDM. Some patients felt empowered to make decisions while others received limited options. Emotional support was inconsistently addressed, often absent unless patients or caregivers sought it out. Regarding clinical trials, participants noted limited targeted information for refractory disease and inequitable access to trials and specialty centers, though some overcame barriers through self-advocacy and persistence. Patients identified key supports for informed SDM, including trusting provider relationships, access to accurate information, and engagement with patient advocacy organizations for peer support. Conclusions: Although providers emphasized SDM as central to R/R FL care, patient experiences revealed inconsistent implementation in practice. This disconnect highlights the need for intentional strategies to operationalize SDM across care settings, including improved communication, patient education, and structural supports to ensure patient values meaningfully inform treatment and clinical trial decisions.