The bladder cancer journey: Using a social media campaign to uncover educational needs of patients' caregivers.

Abstract

e21017 Background: After a cancer diagnosis, many patients and their family members/friends turn to social media for information and support. Despite the prevalence of bladder cancer, social media resources are lacking compared to those for other cancers and contain moderate- to poor-quality information. To address these gaps, we designed a nationwide educational campaign using social media to raise awareness about bladder cancer symptoms, diagnosis, and treatments, as well as empower patients and caregivers to voice their concerns to their cancer care team. Methods: The educational campaign began with a live session on Instagram with a urologist content creator and oncologist to provide opportunities for real-time learning and dialogue about bladder cancer symptoms, diagnosis, and treatments. Next, 4 content creators with connections to bladder cancer or to those who may have an increased risk disseminated educational content about bladder cancer symptoms, diagnosis, and treatments. A survey evaluated the awareness and experiences of caregivers (family members or friends) of people with bladder cancer. Results: The live session and social media campaign garnered almost 170,000 total views. Among the comments posted (n = 30), the top themes included personal experience with bladder cancer (83%), appreciation for education (57%), early detection/positive outcomes (33%), and frustration with treatment (30%). In the survey, 67% of caregivers (n = 79) were able to correctly identify blood in the urine as the most common symptom of bladder cancer, but 65% (n = 79) said they were not at all familiar with symptoms before their family member/friend was diagnosed. Regarding their experiences with the cancer care team, 62% (n = 77) said they were extremely or moderately satisfied with the communication between their family member/friend and their cancer care team. Notably, only 41% (n = 76) said their family member/friend felt extremely or moderately included when making decisions with their cancer care team about their treatment. Additionally, 48% (n = 75) said they wished their family member’s/friend’s healthcare team talked more about their overall well-being. When asked to describe the most common difficulties their family member/friend experienced in receiving cancer treatment, caregivers (n = 48) most frequently reported access to care (25%), side effects from treatment (21%), and death (21%). Caregivers (n = 45) identified critical gaps in information that they felt should have been addressed before treatment began, specifically regarding symptoms/early signs of bladder cancer (27%), education in general (24%), treatment options (18%), and support needs (16%). Conclusions: Family members and friends feel underprepared to support patients with bladder cancer, primarily due to insufficient early education about symptoms and inadequate resources for ongoing reference and support.