QUALITY OF LIFE OUTCOMES AND TREATMENT SUCCESS

Dr Deme Karikios is a medical oncologist working at the Nepean Hospital in Sydney. He has a clinical and research interest in thoracic and gastrointestinal malignancies. We spoke to him about the importance of quality-of-life outcomes and looking beyond survival rates when discussing treatment success.

“So, I think outcomes that matter are those that really meaningfully improve the patients’ lives, whether they have metastatic breast cancer or any other type of cancer or illness for that matter. For us as a movement, we think those main things are survival time, so how long you live and also the quality of that time.”

“I think they’re the two main things that matter to really anyone living with any illness, and the most important things we can measure in any trials we do looking at new treatments.”

How does focusing on these outcomes enhance patient centred care in oncology?

“So, if we imagine doing studies and trials of new treatments, where we measure things that don’t actually improve people’s quality of life or survival, then we’re sort of wasting their time. There’s a number of concerns with that.”

“Coming to the doctor and having tests and having all this treatment, which may cause many side effects, which doesn’t actually improve things for years is terrible. So, we want to really avoid that. So really doing research that tries to identify outcomes that matter and measure them better is only going to ultimately help individuals with cancer to feel better and live longer.”

What are some key indicators of quality of life that are considered most important in evaluating treatment outcomes for breast cancer survivors?

“Yeah, it’s tricky because I think I guess it depends on the tool you use. I’m not personally familiar with all the best possible tools to use in someone with metastatic breast cancer or any breast cancer survivor for that matter.”

“I think using a quality-of-life tool that really captures what’s important to patients is what we should be aiming for obviously. We want to make sure that tool is validated, so it can measure what it says it’s measuring. I guess ultimately if we get that right and get the measures right, I’m not sure exactly what should go into those tools, but if we get that right, then we’re going to be more certain that the treatments we’re offering patients do really improve their quality of life and ultimately make them happier and feel better.”

Why is it important to look beyond survival rates when discussing treatment and success in breast cancer?

“I still think survival is one of the most important things. If I was having treatment for cancer, I’d want to know how long I’m going to live or what’s my chance of cure with this treatment versus that one. But of course, we want the journey on the way to be of the best quality as possible.”

“So, I think a lot of trials that we do, whether it’s within trials groups like Breast Cancer Trials, or any trials groups, don’t focus on quality of life enough and that’s because it’s challenging to measure and often expensive and takes longer. I think we need to put a lot of effort into that so we can make sure however long someone might live with cancer, that their quality of life is as good as it can be or we’re measuring it as good as we can be.”

“So, I think for focusing on the things that matter to patients, then it’s much easier to explain what benefits a certain treatment has. If you can imagine when you’re talking about things like whether a tumour shrinks on a scan or whether the pathology is good or bad, they’re things that are a bit abstract. What I like about trials that measure survival and quality of life, are that you can explain to someone more clearly what benefits they will have.”

“You can say, ‘you’re going to likely live six months longer or 12 months longer with this treatment’. Or ‘you might have a 10 percent chance of cure if you have this treatment’. I’m talking about those other concepts. Sometimes it’s a bit difficult to explain to a person, what does that really mean to me? What does that mean long term?”

“That information is useful but isn’t helpful to them when making treatment decisions. I think when we’re talking to patients, we want to be as clear as possible about what benefits they actually should expect. And so, I think that’s why we need to focus on those outcomes that matter to them because then you can explain to them, ‘this is what this treatment will do for you’.”

For women who might currently be navigating breast cancer, what advice would you give them in terms of prioritising outcomes that matter to them personally?

“I think it’s about talking to your treating doctor, whether it’s your surgeon, radiation oncologist, medical oncologist, whoever it is about what matters to you. Of course, we think survival and quality of life matter most, but there may be specific things that matter to the individual and raising them any time along the journey is important because I think then the treatment that is offered to you can be tailored based on those wants and needs.”

“For example, patients might say, ‘I want to come in less often because I have to care for my child’. And I think that’s useful, because then we can sometimes offer them a treatment which is less frequent or perhaps give them less treatment because those things are more important.”

What are your hopes for the future of breast cancer research?

“I’m not a breast cancer doctor, but I am obviously involved in cancer care research, and I think obviously if we could get a cure for breast cancer, that’d be fantastic. I think that happens with early disease, which is great. But what I would love is for patients to have the best possible treatment that helps them live the longest but feel the best.”

“You know, in an ideal world there is a treatment, even if you have an incurable cancer, a treatment that you can stay on forever without any quality of life issues and you can live a length of life that you would normally live.”