From Our President - The Quality of Life

 

When was the last time someone asked you about your quality of life?

Probably never – and it’s probably not a question you would ever expect. But for a cancer patient or survivor, it’s profoundly important. When you’re living with cancer – or living beyond it – quality of life is everything. It’s about feeling heard, feeling valued, feeling supported.  

It’s why the European Cancer Organisation is now engaged in a vital EU-funded project on the topic: EUonQoL.

At its General Assembly earlier this month, I took the opportunity to call for bold steps to embed quality of life into every stage of cancer care – to make it an essential outcome and not just a general aspiration. But to do that, we need the right tools, the right training, and the courage to invest in what truly matters to patients and survivors. Currently, despite lofty ambition, that aspect of cancer care remains significantly underfunded. This must change.

During the General Assembly we reviewed preliminary data from 25 European countries – ample material to devote a full day to discussing and debating how to move forward.     It should be noted that quality of life measurements have been proposed routinely for the last thirty years. It’s why you’ll find so many frameworks, and references, and instruments to assess emotional well-being. We know from experience: this is no easy mission.

It's also why EUonQoL is taking a different path. It begins by identifying the most effective existing initiatives from previous efforts –– from across Europe and beyond – and integrating them into a common, coherent framework. That means collaborating with the many researchers and psycho-social experts who’ve come before us.

The project then builds on that work to create new, more focused and nuanced questionnaires for patients and survivors, each designed for greater self-assessment at different phases of the disease. This could not be done without the project’s vast European network of research institutions, cancer centres, and an array of professionals with deep expertise in the field of quality-of-life research.

The goal is clear: measure and improve what truly matters to patients and survivors in their day-to-day lives.

Cancer is such a personalised experience. So we must measure what matters in a way that can be used by health systems across Europe and integrated into individual patient records to help shape every aspect of care.

In the end, it can seem so basic: Ask the patient and survivor what they want, what’s bothering them, what’s fundamentally changed for them. Take the time to listen and compile their answers. This is what it means to truly care about the cancer experience and how to improve it.

And often, it all begins by asking that simple question: ‘How’s your quality of life?’

With best wishes,
Csaba
Prof. Csaba Dégi