Patient involvement in care remains an ongoing challenge
The key issues: patients’ ability to understand, monitor and manage their condition, whilst also recognising the impact it continues to have on their daily lives.
Only 1 in 3 people with chronic myeloid leukaemia (CML) feel completely at ease asking their haematologist questions. Furthermore, 4 in 10 patients feel they are not sufficiently involved in treatment decisions, and only 30 per cent routinely keep track of changes related to their condition. These figures, which emerged from a recent study by ELMA Research into the communication needs of people living with the condition – commissioned by Novartis Italia – highlight how patient empowerment remains an ongoing challenge.
The study, carried out on 90 people with newly diagnosed or first-line chronic myeloid leukaemia, highlights areas for improvement in terms of information, symptom monitoring and communication with specialists, but 38 per cent do not consider themselves adequately informed about the symptoms to monitor and, as mentioned, only 30 per cent routinely record changes in these symptoms.
Alongside the challenges relating to information and patients’ active involvement, the issue of the impact of the disease and treatment on everyday life also comes to the fore. A second national survey on unmet needs and the impact on quality of life in CML, conducted using Patient-Reported Outcomes (PROs), examined the physical, psychological and emotional experiences of people with chronic myeloid leukaemia. The survey revealed that 73 per cent of participants reported chronic tiredness, 65 per cent reported fatigue or weakness, and 59 per cent reported muscle pain. Taken together, the two studies highlight different yet closely linked aspects: namely, patients’ ability to understand, monitor and manage their condition and, at the same time, the impact that this continues to have on their daily lives.
CML accounts for around 15–20 per cent of leukaemias and, in Italia, has an incidence of 1–2 new cases per 100,000 people per year. It mainly occurs in adulthood and old age, and in Western countries, the median age at diagnosis is around 57 years.
The prospect of living with the condition for a long time therefore brings into sharp focus the sustainability of the treatment programme, its tolerability and the factors that affect everyday life.
