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Patient experiences of chronic myeloid leukaemia

Why did we do this research?

Although chronic myeloid leukaemia (CML) can be successfully treated, research has shown that it is a disease that may impact on quality of life. Consequently, understanding the day-to-day experiences of people living with CML, such as taking tablets regularly and managing possible side-effects, has gained in importance. With the aim of improving future care, this study sought to understand CML from the perspective of patients and the nurses and doctors caring for them. 

What did we do?

The study involved detailed interviews with 17 people with CML who lived in the HMRN region, and 13 doctors (Haematology consultants) and nurses (Clinical Nurse Specialists; CNSs) in the area, who provide care for people with CML. The interviews explored how CML is managed, what people do to cope with their disease, and how doctors and nurses help to manage care. Experiences were analysed by comparing what different people said, and looking for similarities and differences. This information was used to produce an account of what it is like to live with CML or to care for people with CML.

What did we find?

Most patients said CML had changed their day-to-day life and that they had experienced various difficulties as a result of having the disease (e.g. treatment side-effects). Feeling positive, having valued family support, having knowledge about the disease, and receiving good care from doctors and nurses helped patients manage their CML and its treatment. All patients reported ways of reminding themselves to take their medication, often involving sticking to daily routines, that acted as prompts. Nonetheless, several people said they sometimes forgot to take their medication. Half of these said they were not too concerned about this, particularly if they felt well and their disease response was good; one in three patients did not talk to their nurse or doctor about it. Around half also said they had difficultly, or were reluctant, to discuss treatment side-effects with their nurse or doctor. Reasons for this included not wanting to be prescribed any more medications, or thinking the doctor was too busy. Some had their own ways of managing side-effects including over the counter medication, stretching exercises, and more generally, ‘learning to cope’. Many patients felt that overall their hospital care had been good, particularly the support they received from their doctor or nurse. Concerns raised included inadequate pharmacy supplies, delayed results and outpatient letters, and difficulty with hospital parking. 

The nurses and doctors interviewed were well aware that a person’s social situation and other illnesses could affect how they coped with CML. They also raised similar concerns to those of the patients; although they thought most patients took their medication as prescribed, most were aware that some did not always do this. This was usually discovered during discussions with patients or by checking blood results and the number of prescriptions requested; problems were largely managed by discussing this with patients and offering advice. Several described feeling anxious about patients whose disease had progressed because they had missed tablets. Clinical staff were aware some patients didn’t tell them about side-effects. When they did, this often led to them changing treatment, prescribing medication to control the side-effects, or offering advice and support.