Chronic Lymphocytic Leukaemia Patient Experiences, Challenges: Insights from AI-Driven Social Media Listening Analysis
Authors: Lai Ashley , Summers Kim , Agrippa Orlando , Ade-Odunlade David , Preston Andrea , Lugthart Sanne 
Published: December 2024

Background
Chronic Lymphocytic Leukemia (CLL) is the most prevalent leukemia in adults in Western countries, with an incidence of 3.5-6.8 per 100,000 in white populations. It typically progresses slowly, with symptoms varying from shortness of breath and recurrent infections to lymphadenopathy, splenomegaly, hepatomegaly, petechiae, B symptoms and more. Many also suffer from fatigue and cognitive issues, impairing social interactions and physical functioning.
Treatment approaches vary from a conservative approach with active surveillance to chemo-immunotherapy, targeted therapies and stem cell transplants. Exploring real-world patient experiences will offer deeper insights into how CLL and different treatment approaches affect daily life, mental health and overall well-being, highlighting aspects often missed in traditional clinical assessments.
Aims
This work aimed to provide real-world insights into the experiences of CLL patients and their carers based on novel insights generated through social media listening. The goal was to identify key challenges to inform and improve service delivery, ultimately enhancing the quality of care, treatment pathways, and patient outcomes in CLL.
Methods
AI web scraping tools collected 189 responses using CLL-related keywords from Instagram, TikTok, Twitter, YouTube, Google Reviews, Reddit, and articles between Jan 23 and Jun 24. These responses were manually reviewed to identify common themes and challenges in CLL patient experience, with AI-powered sentiment analysis providing additional insights.
Results
Overall sentiment analysis revealed that 44% of responses were positive, 33% were negative and 22% were neutral. The main theme was “treatment and management” (n=42), with 60% of these responses being positive. Respondents felt hopeful about treatment advances and personalised approaches to managing CLL, appreciating clear explanations and compassionate care from healthcare professionals.
However, the “watch and wait” strategy was mentally challenging for some patients with low symptom burden, who felt they should be receiving treatment and struggled to understand the rationale for the delay in treatment, leading to anxiety and feelings of helplessness. The second most common theme was “disease knowledge and awareness” (n=38), with most responses being neutral (45%), consisting of questions seeking disease information. The third most common theme was “symptom burden” (n=25), with 51% positive and 47% negative responses. While patients felt better after treatment, many still experienced a poor quality of life due to symptom burdens beyond fatigue, including pain, recurring infections, and treatment side effects, with many uncertain about disease progression.
Among all themes, “carer experiences” received the highest negative responses (50%), with carers feeling heartbroken and overwhelmed by the emotional and practical burden of witnessing their loved ones suffer and die from CLL. Conversely, the theme “patient community support” had the highest positive responses (55%), indicating that patients often find encouragement and motivation in managing their disease through the support of their peers, reflecting a strong sense of solidarity within the patient community.
Conclusions
This study highlighted the importance of social media as a valuable resource for understanding CLL patient and carer experiences. The positive sentiment towards treatment advances and personalised care underscores the significance of these aspects in enhancing patient hope. Symptom burden remains a critical issue, with nearly equal positive and negative sentiments, indicating that while treatment provides some relief, many patients continue to struggle with a poor quality of life. Continued research into novel treatments addressing these aspects is crucial to improving CLL patient experience.
Meanwhile, the substantial number of neutral responses seeking online disease information indicates patients often turn to social media for CLL-related information and there is a need for better online educational resources. The importance of social and peer support networks in the patient care continuum for improving patient outcomes and well-being was also emphasised.
These insights can guide healthcare providers in addressing the main concerns and refining service delivery, to improve patient experience and outcomes in CLL care.