Evolving Patient-Reported Value of Treatment Attributes in Follicular Lymphoma: Insights From the Lymphoma Coalition 2024 Global Patient Survey
Authors: N. Bolaños, M. Lui, L. Warwick
Lymphoma Coalition (Madrid, Mississauga)
Introduction
Follicular lymphoma (FL) is a chronic, slow-growing but incurable cancer characterised by repeated cycles of treatment and remission. While many patients initially achieve long-lasting responses, the cumulative burden of multiple therapies, symptoms, and comorbidities can influence what they value most in their care. Understanding how treatment priorities shift over time is essential for ensuring patient-centred decision-making.
Aim
This study explored how patient-reported treatment priorities change across the disease course among individuals with lived experience follicular lymphoma (FL).
Objective: Identify how the perceived importance of clinical, quality-of-life, and practical treatment attributes varies based on relapse history, supporting more tailored and responsive care planning.
Method
Data: Lymphoma Coalition’s 2024 Global Patient Survey on Lymphomas & CLL.
1,704 respondents with lived experience of FL across 48 countries.
70% female; median age 58 (range 24–92).
Survey was global, online, anonymous, and available in multiple languages.
Groups by treatment history:
Treated but never relapsed (n=944)
Relapsed or progressed once (n=295)
Relapsed or progressed more than once (n=167)
Participants rated the importance of treatment attributes (e.g., survival, side effects, convenience) regarding their most recent therapy. “Important” and “very important” responses were combined for analysis.
Results
Core clinical priorities remained consistently high across all stages:
- Improved or longer survival: 96%, 93%, 98%
- Achieving remission/response: 96%, 95%, 97%
- Quality of life (QoL): 92%, 95%, 95%
Importance of “cure” declined slightly with disease progression:
- 86% at initial treatment
- 75% after first relapse
- 80% after multiple relapses
Practical and experience-related attributes increased in importance over time:
- Figures in the poster highlight growing emphasis on:
- Tolerable side effects
- Home-treatment convenience
- Shorter treatment duration
- Reduced burden on care partners
- Certainty about treatment data/results
- Patients earlier in the journey focused on returning to normal life, while those experiencing multiple relapses prioritised stability, predictability, and minimal disruption.
Figures
- Figure 1: Core clinical priorities across disease stages, showing stability in survival- and remission-focused values but a decline in perceived importance of cure.
- Figure 2: Heatmap of practical attribute importance, demonstrating increasing priority as relapse history progresses.
Conclusions
Treatment priorities among people with FL evolve with disease experience. While survival, remission, and quality of life remain essential throughout the journey, the relative importance of cure decreases and practical considerations become more prominent after relapse.
These findings support the need for flexible, responsive treatment planning that adapts to changing patient needs and expectations over time. They also underscore the critical role of patient-reported outcomes in clinical trials—ensuring new therapies not only deliver clinical benefit but also align with what patients value most in daily life.
References
Lymphoma Coalition. Global Patient Survey on Lymphomas and CLL 2024 – Internal Data.Mississauga, Canada: Lymphoma Coalition; 2024..
Acknowledgement
Thank you to all individuals with lived experience of lymphoma and CLL who participated in LC research, and to LC Member organisations worldwide for their continued support.
Contact Information
shawn@lymphomacoalition.org
More info: https://lymphomacoalition.org/global-patient-survey/
Summary
This poster presents findings from 1,704 people with lived experience of follicular lymphoma across 48 countries.
Key finding:
Treatment priorities evolve with disease progression. Core outcomes—survival, remission, and quality of life—remain highly valued, but the importance of cure decreases after relapse, while practical considerations such as tolerable side effects, treatment convenience, and reduced disruptions to daily life grow in importance.
Impact:
As patients move through multiple lines of therapy, expectations shift from returning to normal life toward maintaining stability and minimizing disruption.
Conclusion:
Dynamic, patient-centred care planning that integrates shifting priorities and robust patient-reported outcomes is essential for improving treatment experiences and ensuring therapies align with what matters most to patients.