The patient at the centre of decision-making and the aim of personalised treatment
Patients are expected to play an active role in their care pathway and in hospital and institutional working groups, but they need training and a sense of physical and mental balance
by Nicoletta Re*
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The role of patients with CML (chronic myeloid leukaemia) has changed significantly in recent years. From being a passive recipient of care, patients are now expected to take an active role, both in shaping their own treatment pathway and in participating in hospital and institutional working groups, thereby helping to improve care processes.
To fulfil this role, the patient must be supported in finding a new physical, psychological and emotional balance, enabling them to cope with the challenges posed by their illness and everyday life.
Building effective dialogue
It is important to develop active listening skills and build an effective dialogue with your haematologist, ensuring that not only your needs but also your expectations are addressed. These include treatment that is better tailored to personal needs and improved management of side effects, discussing with the specialist any adjustments to the treatment, such as reducing doses or changing the dosing schedule. Equally important is being able to start planning your life again: exploring new career opportunities or working patterns compatible with your condition, considering starting a family, travelling again, and fostering more authentic and meaningful relationships with family members and colleagues.
Information and training are essential to make this participation possible.
The training available in hospitals may be limited; patient organisations therefore play an increasingly important role in supplementing it.
