Symptoms from Immunotherapy/Targeted Therapy Most Mentioned Topic by Patients with Melanoma on Health-Related Social Media

Symptoms are frequently discussed on health-related social media by patients with metastatic melanoma who are receiving treatment with immunotherapy and targeted therapies.

In a review of posts retrieved from 5 publicly available melanoma-specific forums during the years 2014 to 2019, symptoms and the impact of those symptoms were the most commonly mentioned topics. The findings were presented in poster format during the European Society for Medical Oncology Virtual Congress 2020.

“Symptoms and their impacts were the most commonly mentioned topics among patients with metastatic melanoma and their caregivers, rather than adherence or other treatment-related aspects,” concluded the research team, led by Guy Faust, BMBS, FRCP, CCT, Clinical Director, Oncology & Haematology, University Hospitals of Leicester NHS Trust, United Kingdom.

They examined the posts from 1037 patients who received immunotherapy/targeted therapy, all of whom had metastatic melanoma. Of these, 499 received the ipilimumab (Yervoy)/nivolumab (Opdivo) combination, 451 received pembrolizumab (Keytruda), 443 received nivolumab, 215 received the dabrafenib (Tafinlar)/trametinib (Mekinist) combination, and 20 received the encorafenib (Braftovi)/binimetinib (Mektovi) combination. A random sample of users’ posts was generated for each treatment group, and the frequency of symptom terms co-occurring with treatment mentions was calculated. A qualitative review of a sample of posts was also conducted.

Fatigue was the most commonly mentioned symptom among users of nivolumab (43%), ipilimumab/nivolumab (33%), and dabrafenib/trametinib (21%). Patients who received pembrolizumab (32%) and encorafenib/binimetinib (30%) most often mentioned pain. Fever was the most commonly mentioned symptom by patients who received dabrafenib/trametinib (21%).

The qualitative review included 407 posts from 141 patients (34 dabrafenib/trametinib, 34 ipilimumab/nivolumab, 28 pembrolizumab, 27 nivolumab, and 18 encorafenib/binimetinib users).

The negative impacts of metastatic melanoma were mostly physical (ie, being less active, difficulty functioning, difficulty walking), followed by psychological (ie, anxiety, concern, depression, frustration). The impact of symptoms varied by the type of treatment.

Physical impacts of symptoms were reported by 18% of patients who received dabrafenib/trametinib and 14% of patients who received pembrolizumab. Psychological impacts were reported by 12% of patients who received ipilimumab/nivolumab and 7% of those who received pembrolizumab.

“Health-related social media provide unique insights into patient experiences of novel treatments and is likely to reflect the true opinions of users of novel treatments without potential reporting bias by medical teams,” the investigators concluded. “High frequency of discussion of symptoms such as pain and fatigue across treatment groups, suggest their importance and impact on patients’ lives.”

Source: Faust G, Booth A, Merinopoulou E, et al. EXCITE: an analysis of the metastatic melanoma patient experience in the advent of novel therapies using health-related social media. Ann Oncol. 2020;31:S763.

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