Abstract
Background Follicular lymphoma (FL) is a chronic, indolent lymphoma, characterized by a typically slow-growing but incurable disease course, with repeated cycles of active monitoring, and treatment. Initial treatment often achieves durable responses; however, many patients experience disease recurrence and multiple lines of therapy over the disease course. While median overall survival can extend beyond 15 years, the cumulative burden of treatment, short- and long-term symptoms and adverse events, and comorbidities can significantly influence patient priorities. Understanding how treatment priorities shift along the disease journey is essential to ensure patient-centred care and align treatment planning with patient expectations.
Methods This analysis is based on responses from the online 2024 Lymphoma Coalition Global Patient Survey on lymphomas and CLL, which included 1,704 people with lived experience (PWLE) of FL from 48 countries, 70% were female, with a median age of 58 years [range 24- 92]. Respondents were categorized by treatment history and only those in the following groups were included in this analysis: (1) have been treated but never relapsed (n=944); (2) relapsed or progressed just once (n=295); (3) relapsed or progressed more than once (n=167). The analysis examined responses to the question: “When deciding on your most recent treatment for your lymphoma or CLL, how important were the following attributes?” Ratings on a Likert scale were consolidated, combining ‘important’ and ‘very important’ to show the proportion prioritising each attribute.
Results Among PWLE of FL, what mattered most in treatment attributes evolved along the disease course, although core clinical priorities remained consistently high.
A cure was rated as important or very important by 86% of respondents at their initial treatment. This dropped to 75% after a first relapse but rose slightly to 80% after multiple relapses, showing that hope for a cure remains, even with repeated treatment. Interestingly, this was not the most important factor when deciding on a treatment option amongst any of the groups analysed.
Improved or longer survival remained near-universal across all stages (96%, 93%, and 98%, respectively), as did achieving remission or response (96%, 95%, 97%). Quality of life (QoL) was consistently a top priority (92%, 95%, 95%), shifting from aiming to return to normal life early in treatment to prioritising stability and minimal disruption as disease progressed.
Practical considerations gain importance over time. Tolerable side effects were valued from the start (79% at initial treatment; 81% after first relapse), dropping to 72% after multiple relapses, possibly reflecting adapted expectations. Home treatment convenience gained importance with increasing lines of therapy, rising from 36% in those who have never relapsed to 49% in those with multiple relapses. Likewise, a shorter treatment duration was valued by 48% at initial treatment, 44% after first relapse, and 54% after multiple relapses, showing increased sensitivity to the time and effort treatments require. Reducing impact on care partners remained stable across groups (56%, 57%, 56%), while certainty about treatment data/results varied slightly (42%, 47%, 44%), indicating a consistent moderate priority.
These results show that while survival, remission, and QoL remain constant priorities, practical and experience-related factors gain importance as treatment continues, underscoring the need for care strategies that adapt to evolving patient preferences.
Conclusion Treatment priorities for PWLE of FL evolve significantly over the course of the disease. While survival, remission, and quality of life remain constants, the relative weight of cure declines over time, while practical considerations take on greater importance. These findings emphasise the need for flexible treatment planning strategies that adapts dynamically to patient experience, integrating clinical outcomes, evolving lifestyle priorities and day-to-day realities at each stage of care. At the same time, capturing and reporting of Patient-Reported-Outcomes is of utmost importance in clinical trials , first to ensure new therapies under investigation are matching patient expectations, and second to ensure clinicians and patients are well equipped with all the information needed on a new therapy that comes to market – including quality of life impact - to make the right therapy decisions.
