Managing treatment and living with chronic myeloid leukaemia

Background: Chronic myeloid leukaemia (CML), a rare blood cancer, was transformed at the turn of this century from a disease with a poor prognosis to one with a chronic course as a result of a targeted therapy, imatinib; an oral tablet. Increasing prevalence has led to growing research interest in issues related to its chronicity such as quality of life and how patients manage their disease, including medication adherence. Little research exists examining the broad experience of patients living with CML within the context of their day to day lives and the health service providing treatment. In this thesis, I aimed to explore the patient and practitioner experience of living with and managing CML, and to produce findings which were relevant to clinical practice. Methods: Qualitative semi-structured interviews were undertaken with a purposive sample of 17 CML patients and 13 practitioners from the same region in England. A thematic analysis of the interview data was carried out, and patient and practitioner findings compared. Findings: Despite being perceived as a generally stable and uncomplicated disease, CML had a significant impact on patients’ lives. Aspects of hospital care and social support systems had potential to buffer this. Patient disease knowledge varied and although a positive perspective was presented, anxieties remained. Practitioners worked with colleagues to support challenging treatment management, and had a broad understanding of the patient’s context however lacked awareness of some aspects. A lack of standard approach to adherence was found and concerns regarding patient reporting of side-effects and non-adherence. Conclusions: This thesis offers to raise practitioner, decision- and policy-maker awareness of the impacts of CML. Sharing care with primary or palliative care services may help to shift the perspective of CML from the hospital to a community setting, which considers the patient’s broader context and encourages them to discuss anxieties and report concerns.