World Chronic Myeloid Leukemia (CML) Day is observed annually on September 22nd and serves to raise awareness about the condition and support CML patients globally. World CML Day celebrates advancements in the treatment of this rare form of blood cancer, acknowledges the unique challenges faced by those affected, and reinvigorates efforts to find a cure.
CML is a cancer of the bone marrow and the blood that develops when a mutation forms in the stem cells that create blood cells. Because these mutated cells are better at multiplying and surviving than normal cells, patients wind up with high numbers of mutated cells and lower-than-normal numbers of healthy blood cells.
The Patient Perspective
Living with CML involves navigating a range of challenges, from managing physical symptoms like fatigue, weight loss, night sweats, fever, and pain, to coping with the emotional and mental impacts of treating a chronic illness.
Let’s listen to a 41- to 45-year-old woman with CML describe what it’s like for her to live with this condition and some of the challenges she faces.
Decoding the Patient Voice
Understanding the patient voice is at the heart of what we do at inVibe, which we approach holistically by analyzing what is said, how it’s said, and how it sounds.
Looking first at what she is saying, this patient focuses on the unique challenges of treating a chronic illness. She conveys strong negativity towards this experience through use of metaphor, characterizing life with CML as a type of “hell.” Next, she elaborates on the burden of long-term treatment, which she emphasizes through linguistic repetition when describing being on treatment “forever and ever and ever and ever and ever,” all the while struggling with high costs and a blurred line between the symptoms of the disease and the side effects of treatment.
Focusing on how it sounds, she describes her experience with strongly negative emotionality (‘valence’), which highlights her frustrations with undergoing long-term treatment. However, she ends on a positive note, expressing her appreciation for the progress that has been made to allow her to live with a condition that was once considered a terminal illness.
Because the efficacy of modern CML treatments allows patients to live longer, this patient’s response highlights a clear unmet need to push the CML treatment landscape in a direction that focuses on ensuring that modern treatments are not only effective, but also more practical for life-long adherence.
Simple, Systematic, Scalable
Our Listening Platform makes it simple for patients to speak with us about their experiences in an open and authentic way and easy for you to engage with their perspectives directly.
If you’re interested in hearing from more patients like this one so that you can gain insight into their experiences, beliefs, behaviors, and desires, schedule a demo with us today and see for yourself.
