Perceived unmet needs and impact on quality of life of patients living with advanced bladder cancer and their caregivers: results of a social media listening study conducted in five European countries.

Background: 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.

Methods: 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.

Results: 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%).

Conclusions: 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.