Background Survival for patients with chronic myeloid leukaemia (CML) changed dramatically at the turn of the century due to the introduction of tyrosine kinase inhibitors (TKIs), taken as a tablet once or twice daily. Such improvements mean the concept of ‘living with cancer’ is increasingly relevant, yet little UK research exists in this context. We used qualitative methods to examine how patients and health care practitioners (HCPs) manage CML on a day-to-day basis, the aim being to identify potential improvements in clinical practice and disease management.

Methods The study was set within a UK population-based cohort of patients newly diagnosed with blood cancers, treated at one of fourteen hospitals in the study area. Semi-structured interviews were conducted with seventeen patients purposively sampled from this cohort, and thirteen HCPs. Thematic analysis was used to analyse interview data and involved an inductive, iterative approach to the complete coding of data and generation of themes. NVIVO software was used to store and retrieve data.

Results Four themes were generated: 1) The importance of optimal clinical management; 2) Multiple types of adherence strategy; 3) Inconsistency in adherence management; and 4) Control of side-effects is complex. HCPs focused on complex treatment decisions, which they based on clinical guidance, and support and input from colleagues; while patients used a range of self-management strategies to aid adherence and control side-effects, of which HCPs could be unaware. HCP advice about non-adherence revealed inconsistencies, reflecting their variable concern over the significance of occasional missed doses. Intentional and unintentional non-adherence was described, including patients sometimes actively choosing not to take prescribed TKIs, a novel finding. Patients could be reluctant to discuss non-adherence with HCPs, who often relied on biomedical indicators to identify this, rather than direct questioning. Side-effects were under-reported by patients and often medically managed by HCPs. Reasons for non-disclosure of non-adherence and side-effects varied, and included patients not wanting to take more medication, a lack of patient concern over missing tablets and limited time for discussion during clinic appointments.

Conclusion Appropriate clinical management by HCPs was juxtaposed against patient self-managed strategies to support adherence and reduce side-effects. Consistent information with clear guidance about missed medication, along with HCP initiated enquiry about adherence and side-effects, could enable patients to better report their concerns; as could longer clinic-time, although this may be limited by resource availability within hospital settings.