Evaluating Patient and Caregiver Perceptions of Advanced Bladder Cancer Systemic Treatments: Infodemiology Study Based on Social Media Data
ABSTRACT
Background:
Despite recent therapeutic advances for locally advanced or metastatic bladder cancer (BC), little is known about patient and caregiver perceptions of different treatments.
Objective:
To assess patient and caregiver perceptions of chemotherapy and immunotherapy for treating advanced BC from social media–posted data.
Methods:
Public posts on social media in the United States between January 2015 and April 2021 from patients with advanced BC and their caregivers were collected. Posts mentioning any line of chemotherapy or immunotherapy were qualitatively analyzed by two researchers to classify perceptions of treatments (positive, negative, mixed, or without perception).
Results:
In this study, 80 posts by 69 patients and 142 posts by 127 caregivers mentioning chemotherapy and 42 posts by 31 patients and 35 posts by 32 caregivers mentioning immunotherapy were included. These posts were retrieved from 39 public social media sites. Among patients with advanced BC and their caregivers, treatment perceptions of chemotherapy were more negative (36%) than positive (7%). Most of the patient posts (71%) mentioned chemotherapy factually without expressing a perception of the treatment. In contrast, caregiver posts expressed perceptions of treatment: 44% were negative, 8% were mixed, and 7% were positive. In combined patient and caregiver posts, immunotherapy was perceived positively in 47% of posts and negatively in 22%. Caregivers also posted more negative perceptions (37%) of immunotherapy than patients (9%). Negative perceptions of both chemotherapy and immunotherapy were mainly due to side effects and perceived lack of effectiveness.
Conclusions:
Despite chemotherapy being standard first-line therapy for advanced BC, negative perceptions were identified on social media, particularly among caregivers. Clinicians may consider increasing support for patients undergoing chemotherapy and their caregivers to help them manage adverse events and understand the role of chemotherapy in treating advanced BC so that they have a more positive experience.
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.