Living with CML: A Qualitative Analysis

Background: Patients with chronic phase CML (CP-CML) have life expectancies approaching the general population because of tyrosine kinase inhibitors (TKIs). Despite achieving excellent overall survival, many patients experience negative health-related quality of life (HRQoL). We sought to describe the experiences of people living with CP-CML on TKIs through baseline qualitative interviews prior to participating in a mindfulness-based intervention (MBI).

Methods: Participants were recruited from a single academic institution to participate in a prospective, single-arm clinical trial of an 8-week, online MBI effective in patients with gastrointestinal cancers. Eligibility included adult patients (>18 years old) with CP-CML taking TKIs. Qualitative interviews were semi-structured and included questions related to their understanding of CML, their primary concern related to their disease, side effects from TKIs, the impacts of their CML diagnosis on their lives (including daily, family/social, professional, and financial), as well as the impact of quantitative BCR::ABL1 PCR testing. Interviews were performed at baseline and at completion of the MBI. Participants provided informed consent and interview recordings were only identified by study number. Qualitative interviews were conducted by study personnel and transcribed for accuracy. Qualitative interviews were analyzed by two independent researchers using the framework method.

Results: Between 2020-2022, 45 patients with CP-CML taking TKIs completed qualitative interviews, with a median age of 49 years (range 23-75). Over half of participants were male (53.3%, n=24/45), and 82.2% (n=37/45) were non-Hispanic White, 11.1% were Asian (n=5/45), 2.2% were Hispanic (n=1/45), 2.2% were Middle Eastern (n=1/45), and 2.2% were African American (n=1/45). At time of the interviews, 82.2% (n=37/45) were taking dasatinib, 84.4% (n=38/45) had a BCR::ABL1 transcript ≤1% (IS), and a median time since diagnosis of 70 months (range 1-234).

In the interviews, all patients identified one or more primary concerns related to their CML, with the potential for disease progression most frequently cited (n=24), followed by finances/health insurance coverage (n=11), side effects (n=11), impact on family/relationships (n=6), and pregnancy/fertility (n=2). Of the TKI-associated side effects, fatigue was reported as the most bothersome by 33.3% (n=15/45). Fatigue leading to functional limitations was a common theme, with one patient reporting “I learned to ask my husband who had never done a thing like that, to stay on top of it for me...to lessen my fatigue.” Most patients (n=35/45, 77.8%) experienced life changes because of their diagnosis, including impacts on their daily lives (n=23/35, 66.7%), relationships with family/friends or social activities (n=17/35, 48.6%), professions (n=14/35, 40%), and finances (n=9/35, 25.7%). Many patients had several life-domains impacted, exemplified as one patient described, “we got legally married to ensure I would have coverage for the health insurance. The necessity of health insurance has driven many decisions in my career because I have CML.” Most patients (n=34/45, 75.6%) experienced anxiety around their BCR::ABL1 test results during their treatment course, although for some (n=12/34, 35.3%) their anxiety improved with longer duration of molecular response. For others, the anxiety surrounding testing never improved, as one patient described, “There was one point where I had to let my work manager know that there may be a week of every quarter where I am just not as proficient or productive because I'm just contemplating my mortality.”

Conclusions: Our qualitative interviews reveal some of the hidden consequences for patients living with CP-CML, including in patients with established diagnoses and well-controlled disease. Future research should continue to focus on ways to support the HRQoL of patients with CP-CML by addressing anxiety, fatigue, and other sources of distress.