Home » Haematology » Empower people to play an active role in CLL care

Peter Williams

Business Unit Director, Oncology, AbbVie

Shared decision-making leads to better outcomes – but people need information and support if they are to play an active role in their own care

Delivering personalised care is at the very heart of the NHS’s vision for the future – yet just 33% of people with chronic lymphocytic leukaemia (CLL) are being offered a choice of treatment. That’s according to Leukaemia Care’s latest annual patient survey, which also found just 56% of people living with the blood cancer had access to a clinical nurse specialist (CNS).

Peter Williams, Director of AbbVie’s oncology business unit, says: “All the evidence suggests that when people are engaged in their own care, they make better decisions about managing their health.  It helps them to live their life based on what matters to them.”

The NHS Long-Term Plan recognises this and has stipulated that everyone diagnosed with cancer should have a personalised care plan by 2021.

“What these latest figures tell us,” says Williams, “is that, while it is a really good ambition, there’s still work to be done to support people to be fully engaged in their own care.”

Shifting landscape of supplementing chemotherapy

The CLL treatment landscape has changed considerably in recent years, with the traditional bedrock of chemotherapy being supplemented by immunotherapies and more targeted, personalised treatments.

And the chronic nature of the cancer means someone may face CLL treatment multiple times, each time requiring a different therapeutic approach. “Each person will have different priorities,” says Williams, explaining that the short- and long-term impact of treatment varies.

Evidence suggests that, when people are engaged in their own care, they make better decisions about managing their health.

“Patient choice is about being able to choose a therapy that best suits your overall life goals. It’s about living better with that disease, but also within the broader considerations of life.

“It might be the difference between having the treatment in hospital or at home. It might be about the ability to continue working or not. Others might want to make a choice around the burden of side effects versus the efficacy of the treatment.”

More CLL patients need access to a specialist nurse

Empowering people to be part of their own care is about the whole system working together to provide everything they need to understand their condition and options, he says.

“The CNS plays a critical role in this, so it was disappointing to see only half of the CLL patients in the survey had access to a specialist nurse. That’s a really important area that could be strengthened.”

People also need to quickly and easily access relevant and easy-to-understand information about treatment options and disease progression, he added. “Patient organisations are in the best position to provide this information, but the rate of innovation is so fast in oncology and haematology that it can be hard for these organisations to keep up with the pace of change.

“That’s where our industry has to partner better with them, so we can provide appropriate information at the right time,” says Williams.

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