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Wednesday, December 5, 2018

Our Research and Training Institute (RTI) took front stage in sunny San Diego this week at the American Society of Hematology (ASH) Annual Meeting. Three abstracts from the RTI were accepted to the conference, each representing a separate blood cancer specialty registry from the Cancer Experience Registry®. The blood cancer specialty registries are disease-specific surveys which help us gain a deeper understanding of experiences specific to certain cancer diagnoses. The Multiple Myeloma (MM) and Chronic Myeloid Leukemia (CML) specialty registries were both launched in 2013.

Here are some of the major takeaways from the findings presented at the ASH Annual Meeting:

  • We found that sleep disturbance among individuals living with MM is intensified when physical symptoms are accompanied by distress.
  • We also found that individuals living with CML who felt prepared to have conversations about treatment during the decision-making process were more likely to be satisfied with their eventual treatment outcomes.

The third accepted abstract presented at the ASH meeting used data from the Chronic Lymphocytic Leukemia (CLL) specialty registry, which launched in 2015. In this abstract, we looked at whether patients discussed recently approved treatment options with their provider. This is an important consideration, since the treatment landscape for CLL is always evolving. We have found that many individuals diagnosed with CLL who participated in the Cancer Experience Registry did not report discussing new treatment options with their clinician, which could have implications for both treatment decision-making as well as future outcomes.

Altogether, these findings demonstrate the need for a “whole patient” approach to cancer care. For example, our MM results highlight that symptom management should involve a comprehensive understanding of both physical and psychosocial symptoms. Our CML and CLL results illustrate the importance of providing patients with resources to help with shared decision-making, particularly as new therapies are introduced. The “whole patient” approach requires an awareness and willingness for collaboration from both the patient and their health care team. Ultimately, this approach can provide a more satisfying and successful approach to cancer care.

Finally, we were pleased to promote the launch of our latest blood cancer specialty registry at ASH this year as well. Through the Acute Myeloid Leukemia (AML) specialty registry, we hope to learn more about patients’ experiences with an AML diagnosis, induction and consolidation therapies, and stem cell transplantations. This registry will help us to better understand the needs of AML patients across the care continuum and provides an opportunity for AML patients and survivors to share their unique stories.

You can view our MM and CML posters, as well as our CLL abstract, on our website.

Share Your Experience

At the Cancer Support Community, innovative patient-focused research is at the heart of what we do. We can’t accomplish this without insight from those impacted by cancer, and that is why we ask patients, survivors, and caregivers to share their stories by participating in the Cancer Experience Registry®, a free, confidential survey that is open to anyone who has been diagnosed with cancer or provides care to someone with cancer.

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