Chauhan Jyoti, Aasaithambi Sathyaraj, Márquez-Rodas Iván, Formisano Luigi, Papa Sophie, Meyer Nicolas, Forschner Andrea, Faust Guy, Lau Mike, Sagkriotis Alexandros
Novartis Healthcare Pvt Ltd, Hyderabad, India.
Department of Medical Oncology, Hospital General Universitario Gregorio Marañón, Madrid, Spain.
JMIR Cancer. 2022 Jun 13;8(2):e35930. doi: 10.2196/35930.
Cutaneous melanoma is an aggressive malignancy that is proposed to account for 90% of skin cancer-related mortality. Individuals with melanoma experience both physical and psychological impacts associated with their diagnosis and treatment. Health-related information is being increasingly accessed and shared by stakeholders on social media platforms.
This study aimed to assess how individuals living with melanoma across 14 European countries use social media to discuss their needs and provide their perceptions of the disease.
Social media sources including Twitter, forums, and blogs were searched using predefined search strings of keywords relating to melanoma. Manual and automated relevancy approaches filtered the extracted data for content that provided patient-centric insights. This contextualized data was then mined for insightful concepts around the symptoms, diagnosis, treatment, impacts, and lived experiences of melanoma.
A total of 182,400 posts related to melanoma were identified between November 2018 and November 2020. Following exclusion of irrelevant posts and using random sampling methodology, 864 posts were identified as relevant to the study objectives. Of the social media channels included, Twitter was the most commonly used, followed by forums and blogs. Most posts originated from the United Kingdom (n=328, 38%) and Spain (n=138, 16%). Of the relevant posts, 62% (n=536) were categorized as originating from individuals with melanoma. The most frequently discussed melanoma-related topics were treatment (436/792, 55%), diagnosis and tests (261/792, 33%), and remission (190/792, 24%). The majority of treatment discussions were about surgery (292/436, 67%), followed by immunotherapy (52/436, 12%). In total, 255 posts discussed the impacts of melanoma, which included emotional burden (n=179, 70%), physical impacts (n=61, 24%), effects on social life (n=43, 17%), and financial impacts (n=10, 4%).
Findings from this study highlight how melanoma stakeholders discuss key concepts associated with the condition on social media, adding to the conceptual model of the patient journey. This social media listening approach is a powerful tool for exploring melanoma stakeholder perspectives, providing insights that can be used to corroborate existing data and inform future studies.
皮肤黑色素瘤是一种侵袭性恶性肿瘤，据估计占皮肤癌相关死亡率的90%。黑色素瘤患者在诊断和治疗过程中会经历身体和心理上的影响。利益相关者在社交媒体平台上越来越多地获取和分享与健康相关的信息。
本研究旨在评估14个欧洲国家的黑色素瘤患者如何利用社交媒体来讨论他们的需求，并表达他们对该疾病的看法。
使用与黑色素瘤相关的预定义关键词搜索字符串，对包括推特、论坛和博客在内的社交媒体来源进行搜索。人工和自动相关性方法对提取的数据进行筛选，以获取以患者为中心的见解内容。然后，对这些背景化的数据进行挖掘，以找出围绕黑色素瘤的症状、诊断、治疗、影响和生活经历的有洞察力的概念。
在2018年11月至2020年11月期间，共识别出182,400条与黑色素瘤相关的帖子。在排除无关帖子并采用随机抽样方法后，确定了864条与研究目标相关的帖子。在所纳入的社交媒体渠道中，推特是最常用的，其次是论坛和博客。大多数帖子来自英国（n = 328，38%）和西班牙（n = 138，16%）。在相关帖子中，62%（n = 536）被归类为来自黑色素瘤患者。讨论最多的黑色素瘤相关话题是治疗（436/792，55%）、诊断和检查（261/792，33%）以及缓解（190/792，24%）。大多数关于治疗的讨论是关于手术（292/436，67%），其次是免疫疗法（52/436，12%）。总共有255条帖子讨论了黑色素瘤的影响，其中包括情感负担（n = 179，70%）、身体影响（n = 61，24%）、对社交生活的影响（n = 43，17%）和经济影响（n = 10，4%）。
本研究结果突出了黑色素瘤利益相关者如何在社交媒体上讨论与该疾病相关的关键概念，丰富了患者就医过程的概念模型。这种社交媒体倾听方法是探索黑色素瘤利益相关者观点的有力工具，提供的见解可用于证实现有数据并为未来研究提供参考。
