OBJECTIVES: Chronic lymphocytic leukemia (CLL) is the most common leukemia in adults. Given that nearly 85% of CLL patients will survive >5 years, understanding patient concerns including quality of life and long-term complications is paramount. We aimed to synthesize the experiences shared by CLL patients participating in an online community with treatment and healthcare resource utilization.

METHODS: Retrospective study using the Inspire Integrated Analytical Database, which links Inspire patient voice with electronic health records (EHR) and medical and pharmacy claims. Natural language processing extracted medical terms embedded within online postings. USA CLL patients were identified if they had at least two distinct CLL diagnoses separated by 30-60 days, and an index date on/before 12/31/2022.

RESULTS: 11,200 members with CLL (with 32,738 posts) have shared experiences since 2015. The 5 most common symptoms discussed included pain, fatigue, emotional distress (sadness, anxiety, anger), swelling, and complaints about an enlarged spleen. The 5 most common treatment-related topics included biopsy (bone marrow, lymph node), chemotherapy, rituximab, steroids, and transplantation. A subset of 426 CLL patients were linked to claims and EHR data. Median follow-up time was 66 months from index date. The median age at diagnosis was 73 years and 53% were female. 6% experienced a Richter’s transformation and 30% developed a secondary malignancy (lung, gastrointestinal, skin cancer). 134 patients (32%) had data for CLL treatment after index date, with median time to first therapy of 10.4 months. The most common treatments were ibrutinib (n=52), venetoclax (n=33) and acalabrutinib (n=26).

CONCLUSIONS: Combining a patient-centered online community database with EHR/claims data may provide unique insights into the cancer journey. We identified high rates of secondary malignancies, possibly uncovering a CLL cohort seeking additional information about long-term complications. Future real-world studies must integrate patient voice to fully understand the consequences of a cancer diagnosis.