Social media posts reveal the true impact of multiple myeloma on patients and caregivers

What can online forums tell us about the disease burden of multiple myeloma?

To help answer this question, Inspire researchers conducted a retrospective, targeted analysis of open social media platforms and Inspire’s closed online multiple myeloma support community. The researchers presented the study findings at the 2022 American Society of Hematology (ASH) Annual Meeting and Exposition.

Project focus: Understand how patients with multiple myeloma manage their disease

This study analyzed patient and caregiver posts on social media platforms and the Inspire myeloma support community. The goal was to capture and better understand patient- and caregiver-reported treatment experiences, unmet needs, and perspectives towards novel multiple myeloma treatments. 

Pharmaceutical and healthcare clients can leverage this analysis of real-world conversations to create clinical, commercial, and medical strategies that more accurately reach and help those affected by multiple myeloma.

Did you know Inspire can combine tokenized patient data, patient-reported outcomes, and medical claims for an even more data-driven view? 

Learn more about our evidence-generation access and capabilities.

Inspire solution: Analyze social media and community forum posts

Of the more than 560,000 multiple myeloma-related posts made from May 2020 to June 2022, 18,636 posts met the study criteria. Inspire researchers analyzed patient and caregiver information shared on Inspire’s closed myeloma community and open social media platforms like Twitter, Instagram, Reddit, blogs, and patient-focused forums.

When possible, Inspire researchers separated comments into two categories: those made by recently diagnosed patients (early-line MM) and comments from experienced patients or caregivers (later-line MM). Recently diagnosed patients accounted for approximately 18% of the posts, while experienced patients or caregivers made 16% of the posts. Researchers were unable to determine the disease stage of the remaining posters.

Inspire findings: Identify opportunities for patient-centric education and support programs on social media

Cartoon-like illustration of a group of unique individuals sharing their thoughts with one another

Inspire researchers identified three primary social media and community forum themes:


Disease burden of multiple myeloma

Approximately 4 in 10 posts from both early- and later-line patients and caregivers focused on the psychological and financial burden of the disease. All patients expressed feelings of depression, anxiety, and stress. Later-line patients also expressed feelings of anger about their prognosis and sadness about dying.

Caregivers noted an emotional burden related to managing their loved one’s disease, and a negative impact on their loved one’s quality of life, as well as their own.

Nearly all posts about financial concerns came from later-line patients or caregivers. Only 1 in 3 financial-related posts were from newly diagnosed patients. People sought advice about paying for treatments and in-home care, as well as dealing with insurance.


Symptom management

About a third of the posts focused on managing symptoms, with pain the primary issue. Symptom management posts also mentioned coping with depression and anxiety, as well as managing treatment side effects.


Disease progression and treatments

Almost a third of the posts focused on disease progression and treatments. Recently diagnosed patients expressed fears related to disease relapse and starting treatments. Later-line patients sought advice and support, and shared concerns about running out of treatment options. 

Posts about novel therapies like chimeric antigen receptor (CAR)-T cell therapy generally involved the sharing of neutral information. A small number of posters expressed sentiments like hope, excitement, and uncertainty. 

Patients and caregivers expressed a need for more information about available treatment options. A lack of posts on certain types of investigational treatments revealed a similar lack of patient and caregiver knowledge on these drugs.    

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