Kap Code, 146 Rue Montmartre, Paris, 75002, France.
Merck Healthcare KGaA, Darmstadt, Germany.
BMC Cancer. 2024 Nov 25;24(1):1444. doi: 10.1186/s12885-024-13092-x.
Advanced bladder cancer (aBC) is a significant health concern in Europe and has a poor prognosis. Patients with aBC face numerous unmet needs and challenges that significantly impact their quality of life (QoL). This study aims to analyze social media data from five European countries to address gaps in our understanding of the unmet needs, challenges, and impact on QoL in European patients with aBC and their caregivers.
This retrospective, real-world study includes public social media posts geolocated in France, Italy, Germany, Spain, and the UK, posted between October 2017 and January 2022. To enhance the filtering process, natural language processing methods and specific algorithms were used to remove irrelevant content and retain posts from patients and caregivers. QoL impacts were identified using a deep-learning algorithm, followed by qualitative analysis. Unmet needs were analyzed via annotation of messages and the saturation method.
A total of 1670 posts from 1396 users (699 posts from 546 patients and 971 posts from 850 caregivers) discussing aBC in 91 publicly available online sources were identified. Half of patients were male (n = 272, 49.8%) while more caregivers were female (n = 474, 55.8%), with an average age of 58.2 and 35.2 years, respectively. Patients and caregivers expressed an impact on QoL, wherein 40.0% (558/1396) of users mentioned at least an impact on one aspect of QoL. Among those, 56.8% (317/558) and 48.6% (271/558) of users expressed physical and psychological challenges, respectively. Most unmet needs identified belonged to two main categories: transversal, i.e., arising throughout the patient's care pathway (307/1092 [28.1%]), and disease specific (295/1092 [27.0%]). Main challenges included worsening of the disease (n = 141, 12.9%), psychological impact (n = 112, 10.3%), and need to share experiences and seek support (n = 94, 8.6%).
This social media listening study demonstrated the profound emotional and physical burden on patients with aBC and their caregivers, and a genuine need for support and an outlet to discuss their challenges, particularly in terms of managing the illness. These results underscore the importance of enhancing education for both patients and caregivers and the necessity for more effective systemic cancer therapies and better palliative care alternatives.
高级膀胱癌（aBC）是欧洲的一个重大健康问题，预后不良。患有 aBC 的患者面临着许多未满足的需求和挑战，这些需求和挑战极大地影响了他们的生活质量（QoL）。本研究旨在通过分析来自五个欧洲国家的社交媒体数据，来了解欧洲 aBC 患者及其护理人员的未满足需求、挑战和对 QoL 的影响方面存在的差距。
本回顾性真实世界研究纳入了 2017 年 10 月至 2022 年 1 月期间在法国、意大利、德国、西班牙和英国的公开社交媒体帖子，这些帖子均带有地理位置标记。为了增强过滤过程，使用了自然语言处理方法和特定算法来去除不相关的内容，并保留患者和护理人员的帖子。使用深度学习算法识别 QoL 影响，然后进行定性分析。使用消息标注和饱和方法分析未满足的需求。
从 91 个公开在线资源中确定了 1396 名用户（546 名患者中有 699 名，850 名护理人员中有 971 名）发布的 1670 条关于 aBC 的帖子。一半的患者为男性（n=272，49.8%），而更多的护理人员为女性（n=474，55.8%），患者的平均年龄为 58.2 岁，护理人员的平均年龄为 35.2 岁。患者和护理人员都表达了对 QoL 的影响，其中 40.0%（558/1396）的用户提到了至少一个方面的 QoL 受到影响。在这些用户中，56.8%（317/558）和 48.6%（271/558）的用户分别表示存在身体和心理方面的挑战。确定的大多数未满足需求属于两个主要类别：贯穿整个患者护理路径的横向需求（307/1092[28.1%]）和特定于疾病的需求（295/1092[27.0%]）。主要挑战包括疾病恶化（n=141，12.9%）、心理影响（n=112，10.3%）和需要分享经验和寻求支持（n=94，8.6%）。
这项社交媒体倾听研究表明，aBC 患者及其护理人员承受着巨大的身心负担，他们真正需要支持和一个讨论他们的挑战的出口，特别是在管理疾病方面。这些结果强调了加强患者和护理人员教育的重要性，以及需要更有效的系统癌症疗法和更好的姑息治疗选择。
