OBJECTIVES:

For patients with advanced bladder cancer (BC), the approval of avelumab, an immunotherapy, as first-line (1L) maintenance treatment for patients with disease control with platinum-based chemotherapy, has resulted in a new standard of care. This study analyzed patient and caregiver perceptions of chemotherapy or immunotherapy using data from social media.

METHODS:

Posts from patients and caregivers were collected from various US social media sources between January 2015 and April 2021 using specific terms for locally advanced or metastatic BC. Mentions of specific treatment type or therapy category (either chemotherapy or immunotherapy) were identified and qualitatively analyzed based on perception of treatments (positive/negative/mixed/without perception). Classification of treatment perception was independently confirmed by manual qualitative review by 2 researchers.

RESULTS:

A total of 1,902 posts for advanced BC were identified, of which 299 reportedly written by 100 patients and 159 caregivers included an experience with ≥1 treatment (chemotherapy, 222; immunotherapy, 77). Among advanced BC patients and caregivers, treatment perceptions of chemotherapy were more negative (36%) than positive (7%). Most of the patient posts (71%) mentioned chemotherapy, factually without adding a perception of treatment. In contrast, caregiver posts expressed perceptions of treatments: 44% were negative, 8% were mixed, and 7% were positive. Among all posts, negative perceptions of chemotherapy were mainly because of side effect and lack of effectiveness. In combined patient/caregiver posts, immunotherapy was perceived positively in 47% of posts and negatively in 22%. The perceptions of these treatments were more negative in messages posted by caregivers (37%) than by patient (9%).

CONCLUSIONS:

Despite chemotherapy being standard first-line therapy for advanced BC, negative perceptions were identified on social media, particularly among caregivers of advanced BC patients. Our findings highlight the need for increased support and education for advanced BC patients and their caregivers to ease potential stress/anxiety associated with chemotherapy.