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Are We Speaking the Same Language? Insights from a Patient and Provider Survey on CLL (Chronic Lymphocytic Leukemia)

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Over the last few years, CLL Society has enjoyed working on several projects with the Association of Community Cancer Centers (ACCC) related to better understanding and improving the quality of care for CLL (chronic lymphocytic leukemia) patients in the community.

The latest joint project was their survey: Are We Speaking the Same Language? Insights from a Patient and Provider Survey on CLL.

Its goal was to gain knowledge about the perceptions of both patients and providers as to various aspects of the CLL journey, including support and education along the way, telehealth, biomarkers, treatment, quality of life, and the impact of COVID-19.

We encourage you to read and download the entire survey report here. Let’s highlight some interesting data points, namely the remarkable difference between the 114 patients and 99 providers regarding their perception of the same events.

Below is just one example from the report:

This tells you that 76% of the doctors remember answering all the patient’s questions, but only 54% of patients felt the same. The differences were much more striking when looking at referrals to support services or supplying a list of CLL-specific resources, or handing out written materials. Were the patients and the doctors in the same room simultaneously?

This survey has so much more to chew on besides these highlights. However, the graphics at the end are particularly compelling.

The study concludes: “These findings suggest that while progress has been made in aligning

patient preferences and providers’ delivery of quality cancer care that respects patients as an equal partner in the shared decision, there remains significant room for further improvement.”

We invite you to visit the ACCC website to learn more.

Stay strong. We are all in this together.

Brian Koffman, MDCM (retired), MS Ed
Co-Founder, Executive VP, and Chief Medical Officer

CLL Society - Living With CLL

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