Chronic myeloid leukaemia : A qualitative interview study exploring disease impact from patient and practitioner perspectives

PURPOSE: Improvements in chronic myeloid leukaemia treatment mean it is now relevant to examine the experiences of living with this cancer over a lifetime. This qualitative study aimed to investigate the impact of chronic myeloid leukaemia, from patient and healthcare practitioner perspectives. METHODS: The research was set within the UK's Haematological Malignancy Research Network; a population-based cohort of patients newly diagnosed with blood cancer, treated at one of fourteen hospitals. Purposive sampling led to interviews with seventeen patients and thirteen health care practitioners. Data were analysed using thematic analysis. RESULTS: Two analytical themes, "Significant impact of disease and treatment" and "Mediators of the impact of disease and treatment", and six sub-themes, were derived from patient interviews and supported with data from practitioners. Chronic myeloid leukaemia was described by patients as having significant widespread impact, which could be mediated by their knowledge, social support, and the quality of healthcare systems. Practitioners reflected patient accounts, but could underestimate the impact of this cancer. They generally viewed chronic myeloid leukaemia as less complex, severe and impactful than acute blood cancers; a message that reassured patients at diagnosis, but could later unintentionally contribute to difficulties discussing side effects and struggles to cope. CONCLUSION: Chronic myeloid leukaemia may significantly impact individuals, particularly as it is experienced over the lifetime. Greater understanding and discussion of the breadth and extent to which patients are affected, including potential mediators, could enhance clinical care.