The Patient Experience of Relapsed Refractory Multiple Myeloma and Its Treatment: A Social Media Review

Background: Patients with relapsed refractory MM (RRMM) report a decline in HRQOL with disease progression and after each relapse, may experience cumulative toxicities from exposure to several lines of therapy. Social media (SM) platforms are rich databases of unfiltered, real-world evidence, where patients share their experiences about diseases and treatments. These platforms provide researchers with a novel approach to understanding the patient perspective. This study aimed to review unsolicited, publicly available patient-reported information (PRI) shared on SM platforms to gain insights into the patient experience of RRMM and its treatment, specifically CAR-T therapy.

Methods: Purposeful sampling of PRI were collected from two SM sources (YouTube [video data] and a patient advocacy website Patient Power [patient blogs; https://patientpower.info]) to identify stories of patients living with RRMM. SM posts were included for review if individuals with a self-reported MM diagnosis described their experience with RRMM and provided commentary on CAR-T therapy. Video/blog data were manually reviewed and content analyzed thematically to address experiences of living with MM, and perceptions and experiences of treatment including CAR-T. Demographic information (e.g., sex and age) were extracted from SM posts along with any accompanying disease information, where data were available.

Results: Of 43 posts initially identified from the SM sources, 14 were considered relevant to the study objective: 10 videos / 4 blogs connected to 19 unique patients with RRMM (9 male/10 female, patient age range, 51-72 years). One patient reported receiving CAR-T therapy (female, aged 51 years) and was the subject of 5 videos and all 4 blogs. RRMM Impacts: Key symptoms reported included: pain, fatigue, bone fractures, infections, and fever. Patient-reported HRQOL impacts included reduced mobility, impeded ability to work, negative impact on family activities, low mood, anxiety, and a loss of independence. Patients used different strategies (e.g., slower pace of life, planning, and self-advocacy) to adapt to their progressing disease. Treatment Experience: Patients reported switching from one continuous therapy to another in order to achieve remission with varying degrees of success. Positive treatment outcomes were unpredictable; patients who achieved remission were uncertain how durable the remission period would be and expected to relapse. Treatment Decision Drivers: treatment toxicity, impact on daily life, time required for in-hospital treatment, and desire to attain life milestones. Treatment Outcomes: Patients prioritized HRQOL impacts over effectiveness; benefits of treatment-free periods included ability to travel or attending key life events (e.g., family weddings). CAR-T Patient Experience: Patient reported 16 lines of therapy and two stem-cell transplants but never achieved complete remission from these prior treatments. The CAR-T procedure (received in 2018) was described as quick / preferable to previous treatments (e.g., stem cell transplants / continuous chemotherapy) despite a serious cytokine release storm. The patient experienced a rapid improvement, within 1 month of receiving CAR-T, and achieved complete remission which she described as life changing/lifesaving: remission allowed her to return to living a 'normal' life (i.e., working and exercise) and reportedly reduced the burden on family.

Conclusions: This study provides valuable insights on the patient perceptions and experience of MM and its treatments using an innovative method for collecting PRI. Although remission was a key treatment outcome for patients, HRQOL and the ability to live their lives on their own terms were often prioritized over treatment effectiveness. The patient who underwent CAR-T therapy experienced a return to a sense of normality as a result of her CAR-T therapy, if for a brief period, which was life changing for both patient and family. Insights generated from this SM review can be used to inform patient-reported outcome measurement strategies for novel treatment clinical development programs. Purposeful sampling of PRI on 2 SM sources limits external validity of insights gathered. The CAR-T experience was a singular experience of one patient; additional insights are to be learned as more patients undergo CAR-T for their RRMM.