Marcelo Graziano Custodio, Hisham Arab, Andressa da Silva van der Laan, Natalia Pedachenko, Qinjie Tian, Maria Celeste Osorio Wender, Tony Piha, Rubina Sohail, Fernando Pineda, Jobert Neves, Rishma Dhillon Pai, Tommaso Simoncini
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引用次数: 0
Abstract
Background: Abnormal uterine bleeding (AUB) impacts the quality of life of women globally. While international classifications and frameworks exist, there are still critical unmet needs in awareness, diagnosis, treatment, and patient support. To better understand these, the lived experiences of patients with AUB shared on social media can offer valuable insights.
Objective: To identify and analyze unmet needs in the management of AUB as expressed during social media discussions.
Methods: Using the social media listening tool Sprinklr Social (Sprinklr Inc.), public posts from X (X Corp.) related to AUB from seven countries (Brazil, China, India, Mexico, Pakistan, Saudi Arabia, Ukraine) over a 10-year period (2014-2024) were analyzed. Posts were categorized by topic, sentiment, and emotion; further analyses assessed patients' unmet needs and feelings.
Results: A total of 926 posts were included. Analysis revealed five critical unmet needs: lack of awareness and understanding (41.8%), impact on wellbeing (27.6%), diagnosis issues (10.9%), dissatisfaction with treatment options (9.7%), and undervalued impact and advocacy (8.6%). Posts about diagnosis and symptoms carried the most negative sentiments; many patients expressed frustration over delayed diagnoses and dissatisfaction with treatment options. Additionally, the emotional and psychological burden of AUB was a recurring theme, suggesting the need for more holistic care approaches.
Conclusions: Gaps in AUB management were identified, with strong emphasis on the need for better patient education, more effective diagnostic processes, and personalized treatment strategies. Incorporating patient voices during the development of treatment guidelines and healthcare policies is crucial for addressing these unmet needs and improving patient outcomes.
背景:子宫异常出血(AUB)影响着全球女性的生活质量。虽然存在国际分类和框架,但在认识、诊断、治疗和患者支持方面仍有严重的需求未得到满足。为了更好地理解这些,在社交媒体上分享AUB患者的生活经历可以提供有价值的见解。目的:识别和分析社交媒体讨论中表达的AUB管理中未满足的需求。方法:利用社交媒体监听工具Sprinklr social (Sprinklr Inc.),对7个国家(巴西、中国、印度、墨西哥、巴基斯坦、沙特阿拉伯、乌克兰)10年间X (X公司)发布的与AUB相关的公开帖子(2014-2024年)进行分析。帖子按主题、情绪和情绪分类;进一步的分析评估了患者未满足的需求和感受。结果:共纳入926个岗位。分析揭示了五个关键的未满足需求:缺乏认识和理解(41.8%),对福祉的影响(27.6%),诊断问题(10.9%),对治疗方案的不满(9.7%),低估影响和宣传(8.6%)。关于诊断和症状的帖子表达的负面情绪最多;许多患者对延迟诊断和对治疗方案的不满表示沮丧。此外,AUB的情感和心理负担是一个反复出现的主题,这表明需要更全面的护理方法。结论:确定了AUB管理方面的差距,强调需要更好的患者教育,更有效的诊断过程和个性化的治疗策略。在制定治疗指南和医疗保健政策的过程中纳入患者的意见,对于解决这些未满足的需求和改善患者的治疗效果至关重要。
期刊介绍:
Gynecological Endocrinology , the official journal of the International Society of Gynecological Endocrinology, covers all the experimental, clinical and therapeutic aspects of this ever more important discipline. It includes, amongst others, papers relating to the control and function of the different endocrine glands in females, the effects of reproductive events on the endocrine system, and the consequences of endocrine disorders on reproduction