Abstract 1141P
Background
Novel immunotherapy (IO) and targeted therapies (TT) for metastatic melanoma (MM) have improved survival. However, limited evidence exists on patient-reported experiences of these therapies. This study aimed to understand the symptom experience of MM patients receiving IO or TT, using health-related social media.
Methods
Posts by MM patients and caregivers (users) were retrieved from publicly available melanoma-specific forums (2014-2019). Data were deidentified to protect patient privacy. The study population included users mentioning an IO or TT of interest. Machine learning was used to identify posts containing a treatment experience. Symptom mentions were captured using natural language processing. Qualitative review was conducted on a random sample of posts to uncover symptom impacts.
Results
The study included 1,037 users: 499 ipilimumab/nivolumab (IpiNivo), 451 pembrolizumab (Pembro), 443 nivolumab (Nivo), 215 dabrafenib/trametinib (DabTram), 20 encorafenib/binimetinib (EncoBini) users. Overall, fatigue was the most frequently mentioned symptom (36% of users), followed by pain (31%) and rash (20%). Fatigue was most common among Nivo (43%), IpiNivo (33%), and DabTram users (21%). Pain was most common among Pembro (32%) and EncoBini users (30%). Qualitative review included posts from 34 DabTram, 34 IpiNivo, 28 Pembro, 27 Nivo, and 18 EncoBini users. Symptom impacts were mostly physical (e.g. mobility issues, difficulty exercising and inability to drive), then psychological (e.g. anxiety, depression and feeling frustrated). Impacts on sleep and social life were reported to a lesser extent. Physical impacts were most common among DabTram (18%) and Pembro users (14%), and psychological impacts among IpiNivo (12%) and Pembro users (7%).
Conclusions
Health-related social media provide unique insights on patient experiences of novel treatments without potential reporting bias by medical teams. High frequency of symptoms such as pain and fatigue across treatment groups suggest their importance and impact on patients’ lives. Future studies are needed to validate findings outside of the online community population and further investigate symptom impacts, for example patient surveys.
Clinical trial identification
Editorial acknowledgement
Legal entity responsible for the study
Evidera.
Funding
Novartis.
Disclosure
A. Booth, E. Merinopoulou, S. Halhol: Full/Part-time employment: Evidera. H. Tosar, A. Nawaz, M. Szlachetka, G. Chiu: Full/Part-time employment: Novartis. All other authors have declared no conflicts of interest.