Experiences of Patients with Adjuvant and Metastatic Melanoma using Disease- Specific Social Media Communities in the Advent of Novel Therapies – EXCITE Project (Preprint)

Abstract

Immunotherapy and targeted therapy treatments are novel treatments available for patients with metastatic and adjuvant melanoma. As recently approved treatments, information surrounding the patients and caregiver’s experience with these therapies, perceptions of treatments, and the effect the treatments have on their day-to-day life are lacking. Such insights would be valuable for any future decision making with regards to treatment options.

This study aimed to use health-related social media data to understand the experience of patients with adjuvant and metastatic melanoma who are receiving either immunotherapy or targeted therapies. This study also included caregivers’ perspectives.

Publicly available social media forums posts by patients with self-reported adjuvant or metastatic melanoma (and their caregivers) between January 2014 to October 2019 were programmatically extracted, de-identified, cleaned and analysed using a combination of natural language processing and qualitative data analyses. This study identified spontaneously reported symptoms and their impacts, symptom duration, and the impact of treatment for both treatment groups.

Overall 1,037 users (9,023 posts) and 114 users (442 posts) were included in the metastatic group and adjuvant group, respectively. The most commonly identified symptoms in both groups were fatigue, pain or exanthema (identified in to 5-43% of patients dependent on treatment group). Symptom impacts reported by both groups were physical impacts, impacts on family, and impacts on work. Positive treatment impacts were reported in both groups and covered the areas of work, social and family life, and general health and quality of life.

This study explored health-related social media to better understand the experience and perspectives of patients with melanoma receiving immunotherapy or targeted therapy treatments as well as the experience of their caregivers. This exploratory work uncovered the most commonly discussed concerns among patients and caregivers on the forums including symptoms and their impacts, thus contributing to a deeper understanding of the patient/caregiver experience.