Challenging Assumptions for Equitable Care: Bladder Health Awareness Month

November is Bladder Health Awareness Month, a time for the oncology community to reflect on progress and opportunities in bladder cancer care. Bladder cancer usually arises from the urothelial lining of the urinary tract, most commonly presenting as non–muscle-invasive bladder cancer. When tumors infiltrate the detrusor muscle, they progress to muscle-invasive bladder cancer, a biologically and clinically distinct stage that necessitates more aggressive management. Typically, the first sign of the disease is hematuria, or blood in the urine. However, not all patients with hematuria receive timely screenings for bladder cancer, causing significant disparities in outcomes. 

Shedding Light on Bladder Cancer Disparities 

According to the National Cancer Institute (NCI), there are nearly 85,000 new cases of bladder cancer in the US each year. The disease is notably more common in men and among White populations, and typically occurs in those aged 55 or older, with the median age at diagnosis being 73. Patients outside those demographic majorities tend to experience worse outcomes, likely because they don’t fit the typical bladder cancer patient profile. Both female and Black patients have a lower relative survival rate than their White male counterparts, regardless of cancer stage at presentation. 

In 2021, the Association of Cancer Care Centers (ACCC) conducted a Bladder Cancer Economics Study to capture a clear picture of bladder cancer disparities. Results of an analysis of Medicare claims between 2016 and 2019 showed that Black, Asian, Hispanic, and North American Native patients are diagnosed later when compared to White patients. After patients presented with hematuria, it took an average of 5.4 months for White individuals with early-stage bladder cancer to receive a diagnosis. For Black patients, that time jumped to 6.5 months, and Asian, Hispanic, and North American Native populations waited an average of 7.3 months. After diagnosis, White patients waited less time before starting treatment, especially in cases of late-stage disease: an average of 35 days compared to 41 days for Black, Asian, Hispanic, and North American Native patients. 

From this study, ACCC produced a list of impactful steps that cancer centers can take to mitigate disparities in bladder cancer, addressing factors like financial toxicity, diagnosis delays, and patient education. Three of those tips became the focus of a quality improvement (QI) study, which funded projects by ACCC members to provide equitable care in their communities. 

Culturally Appropriate Patient Education 

Each of the 3 cancer centers selected for the QI program completed an organizational assessment and participated in an expert-led workshop to identify the institution’s greatest need. Through this process, Crosson Cancer Institute at Providence St. Jude Medical Center (SJMC) in Fullerton, California, recognized an important gap in its patient education resources: the care team needed a bladder cancer–specific resource written in the 3 most common patient languages—English, Spanish, and Korean—that reflects the diverse cultures and health literacy levels of the patient population. 

During the 6-month QI program, SJMC used its already successful prostate cancer patient guide as a template to produce a similar resource for patients with bladder cancer. This guide includes plain-language descriptions, links to resources created by advocacy organizations, and space for nurse navigators to write additional information related to the patient’s treatment plan. The project was led by a nurse navigator and engaged members of the SJMC Patient and Family Advisory Council, as well as staff and members of the Hispanic and Korean communities. As the 6-month period ended, SJMC was preparing to translate the new resource into Spanish and begin integrating it into its clinical workflow, continuing the project’s momentum beyond the initial phase of work. 

SJMC identified that resources created by outside organizations, such as ACCC and the Bladder Cancer Advocacy Network, were particularly helpful for developing its own guide and providing supplemental information to patients. “Learning about all of the resources that are out there was so helpful,” said Fannie M. Hansen, MBA, MSN, RN, executive director of oncology at SJMC. “There is a village helping to make sure these patients get what they need.” 

Increasing Access to Supportive Care Services 

University of North Carolina Health (UNC) is a large health care system, including a provider network, clinical programs in the UNC School of Medicine, 14 hospitals, and an NCI-Designated Comprehensive Cancer Center. While this network has access to a robust range of internal and external supportive care services, they were underutilized by patients. 

UNC used the 6-month QI program to identify all available supportive care services, develop a needs assessment to understand how these services were being used, and distribute the assessment to care team members. The results revealed a gap in knowledge about available resources by UNC providers.  

“Our survey definitely opened our eyes to the fact that it is not just 1 or 2 of us that do not know what resources are available. We have great resources; we just do not know how to access or utilize all of them,” said Kathryn Gessner, MD, PhD, assistant professor of urology at UNC School of Medicine.

The top 3 challenges identified in the needs assessment were time constraints, uncertainty about who to contact to connect patients with the appropriate service, and uncertainty about what resources were available. Moving beyond the QI program, UNC created a plan to develop a resource guide available in the electronic health record, standardize after-visit summaries to include key resources, provide trainings on these new tools, and repeat the needs assessment to evaluate improvement.

Care Coordination Between Urban and Rural Centers 

The University of Kentucky (UK) Markey Cancer Center is the only NCI-Designated Comprehensive Cancer Center in the state. It serves a large catchment area, including all of Kentucky, western West Virginia, northern Tennessee, and parts of southern Ohio; approximately one-third of patients travel more than 50 miles to reach the cancer center. 

UK Markey Cancer Center used the QI program to identify opportunities for better care coordination with community cancer centers. A web-based needs assessment was developed and distributed to urologists practicing in the community to better understand the care services available, timelines for referrals, and barriers to introducing new treatment options in the community setting. The data from this needs assessment will be used to improve care coordination with community urologists and expand the services offered to bladder cancer patients in centers closer to home, removing the logistical and financial barriers associated with traveling for care.

Challenging Assumptions to Tackle Disparities 

When providers only expect to see bladder cancer in the most common demographics, diverse patients may fall through the cracks. Likewise, a complete knowledge of the landscape of bladder cancer care is essential to address these disparities. The 3 cancer centers that participated in ACCC’s QI program committed to collecting data and expanding their awareness of gaps in the field, aiming to optimize the outcomes of their patients with bladder cancer across age, race, and sex.  

“Assumptions are dangerous,” said Stephen E. Strup, MD, FACS, chairman of the department of urologic surgery at UK Markey Cancer Center and participant in the QI program. “Understanding where we are in our state and then helping build what is needed—that is key.” 

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