patient care perspectives
Prognostic Scores in Chronic Myeloid Leukemia: Points for Patient Discussion
Chronic myeloid leukemia (CML) is often assessed by using conventional models that predate the introduction of tyrosine kinase inhibitor (TKI) therapy. Risk stratification helps to inform decision making, but other factors may be of equal or greater importance in discussions with patients.
Director, Adult Leukemia Service
“To me, medication adherence is a more important point of focus during my discussions with patients than prognostic risk scores, and this originates from my experience back in the 1990s, before TKIs were introduced, when we watched people with CML reliably succumb to it.”
You can assess a patient and easily calculate their Sokal Index score or their European Treatment and Outcome Study score, but what ultimately matters is that they get on a therapy that they will tolerate and adhere to. I focus more on the molecular response; if the patient does not meet their milestones, then I will switch tactics. So, to me, medication adherence is a more important point of focus during my discussions with patients than prognostic risk scores, and this originates from my experience back in the 1990s, before TKIs were introduced, when we watched people with CML reliably succumb to it. I came to understand the factors that encourage a patient to adhere to their treatment and how nonadherence leads to treatment failure.
Nonadherence can cause progression of the CML such that it becomes difficult to regain control. In a patient who has stopped treatment completely, you might find high P210 protein and BCR-ABL levels but normal white blood cell (WBC) counts. In addition, you might have a patient with circulating blasts. At that point, management becomes much more challenging, and the plan may involve different strategies to achieve a molecular remission before proceeding to transplant.
I see patients with CML who fall in all different risk categories. For instance, sometimes I see new patients in blast crisis, and the presentations can look like other leukemias, so it is important to check the BCR-ABL. Some of my other patients have high risk, very high WBC counts and splenomegaly but are clearly still in chronic-phase CML. In contrast, I also have patients with WBC counts of 30,000/μL who are completely asymptomatic, with the CML discovered incidentally; they are among the easiest patients to treat.
Thus, every patient is completely different. It would be one thing if they were all otherwise healthy, came in with good scores, and started their treatment at 25 years of age. However, patients are so varied in how they initially present when they come to my practice. That is the challenge.
When I first meet with a patient who has been diagnosed with CML, I have a very thorough discussion with them focusing on everything that we know about the disease. I emphasize that there are medications to help them live a normal life, but only if they are compliant. I also always show patients their molecular response curves to invest them in the process. They are reassured if they are in a major molecular response curve and they understand that it is associated with a normal life expectancy. The key is to also make sure that their normal life expectancy comes with as few medication side effects as possible.
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