Chronic lymphocytic leukemia (CLL) is the most common leukemia in adults. Due to its less common occurrence and slow progression, however, community-based oncology providers are less likely to regularly diagnose and treat patients with CLL. In addition, these providers may have unique difficulties in treating patients with CLL due to limited access to clinical trials, innovative therapies, and/or local/regional experts for referral or consults. Given these barriers, the Association of Community Cancer Centers (ACCC) developed educational resources to support community-based providers treating patients diagnosed with CLL, including the development of a national CLL heatmap.
The primary objective of the CLL heatmap was to increase awareness of the current national CLL landscape as well as facilitate peer-to-peer networks. Thus, the heatmap was designed as an incidence-to-provider profile that highlights where CLL is most frequently diagnosed with an overlay of where specialist providers are located. CLL incidence data was extracted from the National Association of Central Cancer Registries, and a list of CLL experts was gathered from the CLL Society. The term "expert" was loosely defined by recommendations from the CLL Society medical advisory board, executive team, and CLL patient and caregiver community. Once the data was input into the heatmap, additional filters were added for unique data visualization, including raw case numbers, crude case rates per 100,000, and age adjusted rates per 100,000. The heatmap was launched on the ACCC website in May 2019.
The final heatmap highlights significant gaps and disparities related to CLL incidence and expertise. For example, when viewing raw CLL case rates, highly populated states like California, New York, Texas, and Florida show the highest incidence. However, when adjusting for the crude rate or age, the highest incidence shifts to states such as Montana, Maine, and the North-Central region. Most importantly, in both scenarios, there are many geographic areas where CLL experts are extremely limited or lacking altogether.
Overall, this data visualization tool provides an invaluable resource to community-based cancer providers, patients and caregivers, advocacy groups and educators, and health services researchers. Not only is it useful in quickly assessing where additional educational programming may be needed, but also provides important context for CLL diagnosis, treatment, and quality improvement. In the future, additional research could benefit from expansion of the CLL heatmap to account for other aspects of care or inform the replication of the heatmap for other less common cancers.
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