Introduction: Patients with multiple myeloma (MM) often suffer from disease progression through multiple failed regimens from the same classes, prompting the development of new therapies with novel mechanisms of action. With the expansion of MM therapies, optimizing patient benefit requires understanding their experiences, needs, and expectations. Data on patient voice are often filtered by health care providers' (HCPs) and researchers' interpretations and confounded due to various limitations. In recent years, there have been enhancements to data sources (eg, social media data) and methodologies (eg, machine learning), which together facilitate the capture of patient voice to be deeper, more efficient, and more reliable. There is an opportunity to build on existing patient voice data by leveraging these advanced technologies. This study aims to capture patient- and caregiver-reported unmet needs, treatment experience, and perspectives towards novel MM therapies, such as chimeric antigen receptor (CAR) T-cell therapy and bispecific antibodies, from social media.
Methods: This is a retrospective, targeted analysis of social media posts from open social platforms and Inspire's closed online MM communities from May 2020 to June 2022. Open social platforms included Twitter, Instagram, Reddit, patient-focused forums, blogs, and any platform where patients and caregivers interact on patient-driven topics. Pre-identified key search terms and Boolean strings around MM and its treatments were used to identify original and unstructured data on relevant topics. Posts outside of the United States, not written in English, or with key terms indicating they were posted by an HCP were excluded. Posts were analyzed using a mixed methodology including natural language processing and linguistic analysis to uncover relevant insights. Themes were summarized, when indicated in the posts, for early-line (defined as recently diagnosed patients) and later-line (defined as experienced patients) MM.
Results: A total of 18,636 posts, out of over 560,000 MM-related posts, met the study criteria; 3,394 (18.2%) were for early-line and 2,962 (15.9%) were for later-line MM, while the remaining did not specify. Across all posts, the top 3 discussed themes (not mutually exclusive) were burden of MM (40%), symptoms (34%), and disease progression (28%). Common topics included severe pain, psychological burden, exhausted or lack of treatment options, side effects, and financial concerns (costs of care and insurance coverage). The psychological burden for both early-line and later-line MM included depression, anxiety, and stress. Later-line posts additionally expressed feelings of anger towards suboptimal diagnosis (9%) and sadness towards death (22%). Among the financial burden-related posts, later-line posts were more likely to request support compared to early-line posts (100% vs 35%). Financial support requests for later-line MM included expenses for treatment (31%), living (31%), and post-hospitalization care (18%). Among treatment-related posts, early-line posts expressed fear related to relapse (68%) and starting treatment (32%), while later-line posts pertained to a need for advice and support (48%) and concerns about running out of treatment options (52%). Burden on caregivers included emotional burden regarding disease management, impact of MM on quality of life, and a need for more information on available treatment options. Across patients and caregivers, most CAR-T posts were related to neutral information sharing (93%), while posts including sentiment expressed hope (14%), excitement (14%), and some uncertainty (4%). No bispecific antibody-related patient and caregiver posts were captured, indicating a lack of awareness.
Conclusions: This analysis of social media posts identified that the overarching needs for patients with MM and their caregivers involved new treatment options, financial support, and access to education materials. Addressing these unmet needs may help alleviate the anxiety, stress, and other burdens patients and caregivers experience when managing MM. While there is hope and excitement towards new therapies, there is a lack of awareness of specific investigational drugs. Overall, many rely on social media for medical information and advice, indicating opportunities for patient-centric education and support programs.
Lin:Janssen Scientific Affairs, LLC: Current Employment. Kim:Janssen: Current Employment. Ledford:Janssen: Current Employment. Wu:Janssen Scientific Affairs, LLC: Current Employment.
Asterisk with author names denotes non-ASH members.