Medical Oncology, Instituto Português de Oncologia do Porto Francisco Gentil, EPE, Porto, Portugal.
Novartis Healthcare Pvt Ltd (H.A.), Hyderabad, India.
BMC Cancer. 2022 Apr 30;22(1):475. doi: 10.1186/s12885-022-09505-4.
Social media platforms are increasingly being used by stakeholders to generate, access, and share health-related information and experiences. Lung cancer is the most common cancer, impacting > 2 million patients globally. This observational study utilized a social listening approach to analyze social media trends and gain insights into stakeholder perceptions of lung cancer.
This social media study retrospectively collated data from open access blogs, forums, and social networking sites. Social media posts were collected between June 2019-May 2020 from 14 European countries. Using social media aggregator tools, posts comprising lung cancer and non-small cell lung cancer-specific terms were extracted. Manual and automated relevancy algorithms filtered the extracted information to provide the relevant dataset. This contextualized dataset was further mined to generate the final data for analysis.
Of 1360 conversations analyzed, 42% were generated by patients/caregivers and 14% by healthcare professionals (HCPs). A majority of patients were 51-70 years old (approximately 50%) and 91% (n = 500/550) had late-stage cancer. Treatment (35%) and disease awareness (30%) were among the most discussed topic of the patient journey. Although the overall treatment sentiment was neutral, chemotherapy was the treatment type with the highest associated negative sentiment (28%); fewer negative sentiments were associated with immunotherapy (9%) and targeted therapy (2%), due to perceptions of longer survival outcomes and fewer side effects. In conversations that discussed clinical endpoints, "survivability" and "overall survival" (47 and 30%, respectively; n = 539) were most frequently mentioned by stakeholders. HCPs mostly used technical terms, whereas patients and caregivers used colloquial terms such as "getting rid of cancer". Emotional wellness was identified to have a huge impact on quality of life in lung cancer. Delay or treatment cancellations due to COVID-19, lack of effective treatments and funding, and lack of empathy by physicians emerged as the key unmet needs among patients/caregivers.
Social listening proved to be an effective tool to explore stakeholders' perceptions and their key unmet needs, typically not available in published literature or databases, and provides HCPs with valuable insights into the distress, doubts, and needs of lung cancer patients and caregivers.
社交媒体平台越来越多地被利益相关者用于生成、访问和共享与健康相关的信息和经验。肺癌是最常见的癌症，影响全球超过 200 万患者。本观察性研究采用社会倾听方法来分析社交媒体趋势，并深入了解利益相关者对肺癌的看法。
本社交媒体研究回顾性地从开放获取的博客、论坛和社交网站中收集数据。从 2019 年 6 月至 2020 年 5 月，从 14 个欧洲国家收集社交媒体帖子。使用社交媒体聚合工具，提取包含肺癌和非小细胞肺癌特定术语的帖子。手动和自动相关性算法筛选提取的信息，以提供相关的数据集。对这个上下文数据集进行进一步挖掘，生成最终用于分析的数据。
在分析的 1360 次对话中，42%是由患者/照顾者生成的，14%是由医疗保健专业人员（HCPs）生成的。大多数患者年龄在 51-70 岁（约 50%），91%（n=500/550）患有晚期癌症。治疗（35%）和疾病意识（30%）是患者旅程中讨论最多的话题。尽管整体治疗情绪是中性的，但化疗是与最高负性情绪相关的治疗类型（28%）；由于对生存结果和较少副作用的认知，免疫治疗（9%）和靶向治疗（2%）的相关负性情绪较少。在讨论临床终点的对话中，“存活率”和“总生存率”（分别为 47%和 30%；n=539）是利益相关者最常提到的。HCPs 主要使用技术术语，而患者和照顾者则使用口语化术语，如“摆脱癌症”。情感健康被认为对肺癌患者的生活质量有巨大影响。由于 COVID-19 而导致的延迟或治疗取消、缺乏有效治疗和资金，以及医生缺乏同理心，是患者/照顾者的主要未满足需求。
社会倾听被证明是一种有效的工具，可以探索利益相关者的看法及其关键的未满足需求，这些通常在已发表的文献或数据库中无法获得，并为医疗保健专业人员提供了宝贵的见解，了解肺癌患者和照顾者的痛苦、疑虑和需求。
