Real-World Experience of Patients and Caregivers with Early-Line Treatment of Chronic Myeloid Leukemia in the US: A Retrospective 2-Year Social-Media Listening Analysis

Introduction:

Published evidence on experience of patients and caregivers in early-phase chronic myeloid leukemia (CML) in the United States (US) is limited. This social media listening (SML) study was conducted to address this concern and gain insights into CML patient and caregiver treatment experience, quality of life (QoL), and unmet needs in the US.

Methods:

Using Sprinklr, a social media data-aggregator, de-identified data from seven social-media platforms were retrieved (May 2022-May 2024). Relevant posts from the US were filtered and categorized into themes (clinical, QoL and educational). Relevant mentions of CML tyrosine kinase inhibitor (TKI) treatments ­– early-line: first line (1L), second line (2L) and mixed early-line (treatments approved in 1L and 2L CML) – were identified and analyzed.

Results:

Overall, out of the 875 posts, 86% came from Reddit followed by X (5%). Mentions (1135) were classified based on the line of therapy: 1L (8%), 2L (3%), and mixed early-line (89%). Patients and caregivers accounted for 92% and 8% of the posts, respectively. Most patients (60%) were aged 19-40 years. The time since diagnosis ranged from 0 weeks to 1 year (22%), 1-5 years (35%), and 5-10+ years (42%). Dasatinib (53%), nilotinib (19%), imatinib (21%), and bosutinib (6%) were the treatments discussed.

Out of 1047 sentiments, 30% were positive and were primarily driven by the effectiveness of the treatment, while 70% were negative and related to side-effects. The most common side-effects were pain (23%) and gastrointestinal issues (16%). Side-effects and ineffectiveness of medication were largely attributed to dosage adjustments (53 mentions), i.e., a dose reduction on particular treatment or transition to a higher dose, and treatment switches (242 mentions), i.e., changing one treatment to another.

QoL (490 mentions) was a key topic of discussion among patients (98%) and caregivers (2%), covering emotional, social, and financial aspects. Nearly 23% of the mentions focused on the emotional needs of patients, evident from mentions of depression, worry and anxiety. The impact on caregiver emotions was observed in 3% of mentions, equally contributed by fear of side-effects among patients and cost/accessibility of treatment. Mentions regarding patient social aspects of QoL were limited, with direct impact observed on eating, socializing, and relationships with friends/family. The financial concerns as discussed by patients and caregivers were mainly related to the cost of treatment (59% vs.73%) and insurance issues (32% vs.18%).

Additionally, patient sentiments after visits to health care providers (HCP) varied, with 38% expressing positive sentiments based on treatment satisfaction. Negative sentiments accounted for 56% of mentions, attributed to medical dismissal (20%) and treatment dissatisfaction (19%). Caregivers' negative sentiments were driven by a lack of empathy and inadequate treatment-related information provided by HCPs.

A considerable proportion (41%) of unmet medical needs (144 mentions) focused on HCP-related concerns. The lack of effective treatments (22%) and persistent side-effects (13%) were the most common concerns. However, from the caregiver perspective, treatment access (33%) and HCP-related concerns (25%) were frequently discussed. CML patients also posted frequent online queries to seek advice from online peers concerning the issues of side-effects, treatment efficacy, costs and insurance coverage.

Although the study has some natural limitations, such as the source data were mainly contributed by socially active younger patients, it provided valuable insights into this important patient population.

Conclusions:

This SML study innovatively identifies challenges and unmet medical needs in CML by capturing patients’ and their caregivers’ digital voice. This analysis of social media posts identifies that the pressing needs for patients with CML and their caregivers involved new, efficacious, and safe treatment options during the early lines of treatment, open communication with HCPs, financial support, and access to educational materials. Addressing these unmet needs can help alleviate the anxiety and burden that patients and caregivers experience when managing CML. Additionally, as many CML patients rely on social media for medical information and guidance, there are opportunities for patient-centric education and support programs.