A China Survey on the Insights of Patients Living with Follicular Lymphoma: The Real-World Patient Journey Analysis
Authors: He Yang , Zhang Huilai , Xu Bing , Li Zengjun , Song Zheng , Jiang Qiuhui , Wang Hui , Zhao Weili 
Published: December 2024

Background: Follicular lymphoma (FL) is an indolent B-cell lymphoma originating from germinal centers, characterized by chronic progression and recurrent relapses. Patients may face diverse challenges during the long-term treatment. This study aims to assess the real-world journey of diagnosis and treatment in Chinese FL patients as well as to identify the potential unmet needs, in order to provide better support and recommendations for clinical practice.
Method: This study is a multicenter cross-sectional survey with a mixed-methods design combining qualitative interviews (planned for 20 cases) and quantitative questionnaires (planned for 200 cases). Through quota sampling，patients aged 18 years or older with a diagnosis of FL were recruited in the hematology/oncology departments of multiple hospitals across China and they should clearly recall their personal treatment history. Thematic analysis was used to analyze the qualitative interviews, while descriptive statistical methods were employed to analyze the quantitative questionnaires.
Results: In the initial stage of the study, qualitative interviews were conducted in 14 FL patients, and quantitative questionnaires were designed based on the interview results. The study is still in progress, and we mainly present an interim summary analysis of quantitative questionnaires that have been collected. As of July 24, 2024, a total of 48 questionnaires were distributed and 45 valid questionnaires were collected, indicating an effective rate of 93.8%. Among the surveyed patients, 10 (22.2%), 24 (53.3%) and 11 (24.4%) patients were respectively in the treatment stage of first line (1L), second line (2L) and third line and above (3L+). The male patients accounted for 42.2%, and the median age was 53 years (range: 35-76 years). At the time of first diagnosis, 55.9% of patients were in stage III-IV, and 29.4% were in grade 3A. Excluding retired patients, 25.9% were unable to work due to the disease. Totally 82.2% of patients had basic health insurance. After diagnosis, the TOP3 desired information were the overall survival (67.7%), treatment regimen (73.5%) and disease-related information (47.1%).
In the 1L and 2L treatment stage, 95.6% and 71.4% of patients received anti-CD20 monoclonal antibody-based regimens, respectively. Prolonging survival (73.5%) was the main treatment goal for patients in the 1L stage, while in the 2L stage, avoiding relapse (40.0%) became the main goal. Efficacy, safety and disease severity were the primary consideration factors for patients in selecting a 1L regimen, but in the 2L stage, treatment cost jumped to the third position. Fewer patients chose to completed follow the physician' treatment advice in 2L stage compared to 1L stage (57.1% vs. 71.1%), and the remaining patients (42.9%) made decisions based on their actual situation in 2L stage. The main channels for patients to obtain information in the 1L stage included Internet search (76.7%), patient communities (73.5%) and primary care physician (70.6%). In the 2L stage, patients' demand for new medicine information increased significantly compared with 1L stage (45.7% vs. 26.5%).
In the 3L+ stage, 45.5% of patients entered a completely free clinical study since there was no standard of care. The regimen safety became the most important consideration factor, and each individual became the primary decision maker. Primary care physician (90.9%) was the most important source of information at this stage.
Regarding safety, patients reported that adverse effects with the greatest impact on their lives included decreased white blood cells (55.6%), fever due to infection (44.4%) and nausea/vomiting (28.9%).
Conclusion: This study is so far the first one to investigate the FL patient journey in China. Patients' considerations for selecting a treatment regimen varied across treatment stages. Overall, Primary care physicians, patient communities, and Internet search were the main sources for patients to obtain information. Additionally, treatment cost became an important decision-making factor in later line stage.