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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 with Tyrosine Kinase Inhibitors (TKI), this can have an impact on quality of life. Consequently, understanding the experiences of people living with CML, including how they manage their medication and cope with side-effects, has gained in importance. With the aim of improving future care, this study sought to understand CML from the perspective of patients, nurses and doctors. 

What did we do?

The study involved detailed interviews with 17 people with CML who lived in the HMRN region, and 13 doctors and nurses (haematology consultants and clinical nurse specialists) in the HMRN area, exploring:

  • how CML is managed
  • what people do to cope with their disease
  • how doctors and nurses help to manage care.

These experiences were analysed by comparing what 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?

Patients

Most patients said CML had changed their life and caused them to experience various difficulties, which they had tried to adapt to and cope with as follows:

  • Side effects - these varied, the most common being gastro-intestinal, muscular pain/cramps and fatigue. Half said they had found it difficult, or were reluctant, to discuss treatment side-effects with clinicians. This was because they did not want to recieve any more medication, or they thought that staff were too busy. Strategies developed to manage side-effects included taking over-the-counter medication, performing stretching exercises, and generally ‘learning to cope’.

  • Medication compliance - all patients reported methods they used to remind themselves to take their medication; nonetheless, several said they sometimes missed doses. Half of these were unconcerned about missing doses, particularly if they felt well and their TKI response was good. One in three did not talk to their nurse or doctor about it.

  • Coping strategies  - maintining positivity, having family support, learning more about CML and receiving good care from doctors and nurses, helped patients manage their CML and its treatment.

  • Hospital care - many patients felt that their hospital care, particularly the support from doctors and nurses, had been good. Concerns were raised about inadequate pharmacy supplies, delayed results and outpatient letters, and difficulty parking. 

Clinical staff

The nurses and doctors raised similar concerns to the patients:

  • Coping - clinical staff were well aware that a person’s social situation and other illnesses could affect how they coped with CML.

  • Medication compliance - although they thought most patients took their medication as prescribed, there was awareness that some did not. This was identified via discussions with patients or by checking blood results and prescription requests; problems were largely managed by discussing this with patients and offering advice. Several experienced anxieties on behalf of patients whose CML had progressed due to non-compliance.

  • Side effects - clinical staff were aware some patients didn’t tell them about side-effects. When they did, this often led to treatment changes, further medication to control side-effects, or advice and support. 

Publications

Below is the first of a series of publications which will explore this topic in more detail: