patient care perspectives
Optimal Practices for Active Surveillance in Chronic Lymphocytic Leukemia
Many patients with newly diagnosed chronic lymphocytic leukemia (CLL) do not require treatment initially, and some may never require treatment at all. Prognostic testing and patient education are powerful tools in active surveillance.
Susan O’Brien, MD
“Patient education is extremely important in the setting of active surveillance. . . . The clinical assessment and a FISH panel showing low-risk CLL might solidify a clinician’s comfort level with active surveillance, but the patient also has to have enough information to be confident with this approach and to help reduce their anxiety.”
In patients with newly diagnosed CLL, one must determine whether they are candidates for active surveillance and can therefore delay treatment or whether they have disease that requires treatment. Approximately 75% or more of individuals with newly diagnosed CLL have early stage disease and may qualify for active surveillance. A diagnosis of CLL in its early stage often occurs, in part, because of the high frequency of medical-related appointments that many patients routinely have, such as physicals or preoperative clearances. It is not uncommon for CLL to be detected incidentally when blood is drawn for something unrelated, especially as people get older and need joint surgeries or hip replacements.
Suppose that it is very clear that a patient with CLL is going to have active surveillance (eg, they have a mildly elevated white blood cell count, no cytopenias, and no enlarged lymph nodes). In this scenario, the question becomes: Is it necessary to do the prognostic factor analysis right away? I do not believe that there is only one correct answer to this question, and every clinician has a different practice style, but I find prognostic testing to be very useful in monitoring the patient.
Consider a newly diagnosed patient whose fluorescence in situ hybridization (FISH) testing reveals a 17p deletion. Although this affects perhaps only 5% to 10% of individuals with CLL who receive initial treatment, it is, nonetheless, an important finding that informs monitoring. Now suppose that the patient has isolated 13q deletion or mutated IGHV, both of which are associated with better prognoses. All else being equal, the patient with 17p deletion is going to be monitored more frequently than the patient with low-risk disease.
Patient education is extremely important in the setting of active surveillance. In fact, even those with very good prognoses need a fair amount of education. The clinical assessment and a FISH panel showing low-risk CLL might solidify a clinician’s comfort level with active surveillance, but the patient also has to have enough information to be confident with this approach and to help reduce their anxiety. If we are going to impact a patient's quality of life with our counseling, that person needs to have a good understanding of what to expect. Specifically, I find that it is very helpful to give the patient some perspective on when they will likely require treatment, if at all. The FISH mutational status and the CLL International Prognostic Index can be useful in predicting the time to first treatment. Finally, it is important to note that, although there are steps that we can take to reduce anxiety among individuals with CLL (eg, patient education), quite honestly, I do not think that we could ever take their anxiety away completely.
Condoluci A, Terzi di Bergamo L, Langerbeins P, et al. International prognostic score for asymptomatic early-stage chronic lymphocytic leukemia. Blood. 2020;135(21):1859-1869. doi:10.1182/blood.2019003453
Hallek M, Cheson BD, Catovsky D, et al. iwCLL guidelines for diagnosis, indications for treatment, response assessment, and supportive management of CLL. Blood. 2018;131(25):2745-2760. doi:10.1182/blood-2017-09-806398
Kim C, Wright FC, Look Hong NJ, et al. Patient and provider experiences with active surveillance: a scoping review. PLoS One. 2018;13(2):e0192097. doi:10.1371/journal.pone.0192097
Muchtar E, Kay NE, Parikh SA. Early intervention in asymptomatic chronic lymphocytic leukemia. Clin Adv Hematol Oncol. 2021;19(2):92-103.
Trevino KM, Martin P, Chen Z, Leonard JP. Worsening quality of life in indolent non-Hodgkin lymphoma and chronic lymphocytic leukemia patients in active surveillance: a 12-month longitudinal study. Clin Lymphoma Myeloma Leuk. 2022;22(2):82-88. doi:10.1016/j.clml.2021.08.001