Chronic Myeloid Leukemia (CML) is a type of slowly progressing Leukemia. CML occurs when bone marrow makes too many white blood cells. It is most commonly diagnosed in middle-aged and older adults, and rarely occurs in children. Advances in CML treatments have significantly changed the outlook for many CML patients. Today, most patients are living years or even decades beyond diagnosis. As a result, many patients only see their oncologist every few months. This means that the treatment experience for CML patients/survivors can look and feel very different from that of other cancer patients/survivors.
The Cancer Support Community (CSC) recognized the unique needs of CML patients and wanted to create a discussion tool that CML patients could use to facilitate better conversations with their health care team. The CSC education team utilized CML specific information from CSC’s Cancer Experience Registry to create the CML Discussion Tool. The team also conducted interviews with CML patients and caregivers, who provided qualitative feedback on the tool.
Focus group participants were vital to the creation of this discussion tool. They voiced a need for more financial and support resources. They also made recommendations for symptoms and side effects that should be included and discussed. Participants wanted a tool that they could take notes on. They mentioned that information on self-advocacy and personal growth should be included. All of these recommendations were incorporated into the final version of the CML Discussion Tool. Patients and caregivers felt that this tool could be useful for newly diagnosed patients, patients switching to a new treatment or provider, and those who have infrequent visits to their oncologists. The intention is for patients and caregivers to use the discussion tool to assess their treatment goals and the impacts that CML has on their daily lives and prepare for discussions during medical appointments.
This week, CSC is presenting the results of the CML focus group interviews at the Academy of Oncology Nurse & Patient Navigators (AONN) Conference, a national meeting focused on oncology navigation and survivorship.
To download the CML Discussion Tool, visit www.CancerSupportCommunity.org/CMLTool.
To order the CML Discussion Tool, visit https://orders.CancerSupportCommunity.org/
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