Chronic Myeloid Leukaemia: A Qualitative Study of Patient and Practitioner Experiences of Managing Treatment

Abstract

Background. Following the dramatic impact of tyrosine kinase inhibitor (TKI) drugs on chronic myeloid leukaemia (CML) survival, research interest has grown into the long-term impact of treatment, identifying difficulties with medication adherence and ongoing side effects. Qualitative studies suggest the disease has a significant physical and psychological impact on patients, and medication management may be complex. However, only one study worldwide has examined healthcare practitioner (HCP) experiences of managing CML treatment and very little UK qualitative research exists exploring the patient experience. Purpose. Our qualitative study aimed to investigate both patient and HCP experiences of managing CML treatment in the UK. Methods. Patients and HCPs were purposively sampled from within the Haematological Malignancy Research Network (HMRN), a UK population-based patient cohort. Qualitative interviews were carried out with seventeen patients and thirteen HCPs, and data were analysed using thematic analysis. Results. Four themes were developed from interview analysis: “Importance of optimal clinical management,” “Multiple adherence strategies,” “Inconsistent management of adherence,” and “Controlling side effects is complex.” HCPs tended to focus on sometimes complex, clinical decision-making. Patients described various strategies to support adherence and manage side effects, some of which HCPs seemed to be less aware of. Several patients did not discuss non-adherence or side effects with their HCP, who tended to avoid direct enquiry regarding adherence and could be uncertain about adherence advice, whilst relying on medical strategies to manage side effects. Conclusions. Despite HCPs focusing on the medical management of CML treatment, patients may opt to use self-management techniques to control adherence and side effects and can be reluctant to discuss related difficulties. Increased clinic time and clear adherence advice guidance may support such discussion, in addition to adjusting the context of follow-up care through the introduction of shared care with GP services.