Perceived Unmet Needs in Patients and Caregivers Living With Advanced Bladder Cancer: An Infodemiology Study Using Data From Social Media in the United States
ABSTRACT
Background:
Locally advanced or metastatic bladder cancer (aBC) has a very poor prognosis. However, few studies have assessed the unmet needs and burden of aBC from the patient and the caregiver perspective.
Objective:
To identify the main discussion themes and the unmet needs of patients with aBC and their caregivers through analysis of social media posts.
Methods:
Social media posts were collected between January 2015 and April 2021 from US geolocalized sites using specific keywords for aBC. The verbatim posts were analyzed to identify main discussion themes using biterm topic modeling. Difficulties or unmet needs were further explored using qualitative research methods by 2 independent annotators until saturation of concepts.
Results:
A total of 688 posts from 262 patients and 1214 posts from 679 caregivers discussing aBC were identified. Analysis of 340 randomly selected patient posts and 423 randomly selected caregiver posts uncovered 33 unique unmet need categories among patients and 36 among caregivers. The main unmet patient needs were related to challenges regarding adverse events (29.5%) and the psychological impact of aBC (21.1%). Other patient unmet needs identified were prognosis or diagnosis errors (9.5%) and the need for better management of aBC symptoms (9.5%). The main unmet caregiver needs were related to the psychological impacts of aBC (26%), the need for support groups and to share experiences between peers (15.8%), and the fear and management of patient adverse events (12.4%).
Conclusions:
Social media posts from patients with aBC and their caregivers highlighted the emotional burden of cancer for both patients and caregivers. Additional studies on patients with aBC and their caregivers are required to quantitatively explore the impact of aBC on quality of life.
Citation
Request queued. Please wait while the file is being generated. It may take some time.
Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.