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Interview with Dr. Matti S. Aapro - Editor-in-Chief of the Quality of Life in Oncology Resource Centre, September 2013

Quality of Life Resource Centre

Dr. Matti S. Aapro, Editor-in-Chief of the Quality of Life in Oncology Resource Centre, talks us through the key developments and challenges regarding Quality of Life (QoL) in oncology and defines what this Resource Centre is setting out to achieve.

Over the recent years a huge improvement is seen in the QoL of cancer patients. Hair loss is still associated with most treatments, but patients are no longer constantly in pain and vomiting, and they are not hospital bound but much more mobile than they used to be. 

Still, we have to always consider the patient’s wishes. For one patient a tough treatment that will extend life for a few more months so that important event comes within reach, is worth all the hardship. Yet another patient, with e.g. no such goal on the horizon, will reject treatment as the level of suffering is perceived as too much for just a few extra months. So, we should attempt to always match the patient’s goals with what we can offer.

With new drug development, clinical trials measure the drug’s impact on progression-free survival. But what value is there in gaining a few months while you will be miserable because of the side effects? For example: in geriatric oncology, an older patient with cancer is still mobile and living independently. There is a treatment option with side effects that a young patient can tolerate, due to the ample availability of reserves. The older patient will not have such reserves and may lose its independence and mobility. E.g. if the drug is neurotoxic, it may well increase fall risks that may lead to fractures, resulting in an immobile and dependent elderly patient.

QoL is not, and should not be, an endpoint for clinical trials in oncology – the main aim of a trial is to gain survival, stop progression, extend life. QoL can not be the primary aim of such studies. There are QoL instruments for clinical trials, and sub-instruments for the different types of disease. However, the translation to practice is often difficult; just like measuring average values does not reflect the effect on the individual level. There are, however, other studies that can specifically look at QoL, without looking at efficacy, but a good regulatory framework for such studies is lacking.

Insurers are used to the measure for the impact on patient survival. It is difficult for them to approve reimbursement for a drug that does not impact patient survival, but for instance reduces treatment related nausea and vomiting, while this has a huge impact on the patient’s QoL. How can we develop proper measurements that will be used by the payers?

This Quality of Life in Oncology Resource Centre aims to be the site where all relevant information in relation to QoL and oncology can be found. Currently there are many options for using search engines to find what you are looking for on the internet, but such searches do often not deliver e.g. all the key papers. With the help of a core faculty, that will extend to a larger faculty with the right papers and resource centres, that will be the place to find all relevant information on issues related to QoL, supportive care, and palliative care. For instance, there are many meetings focusing on issues related to QoL with great specialist speakers providing a wealth of information. If you can not attend such meetings, you miss out on vital information. By providing access to e.g. videos and slides of key lectures the Resource Centre will diffuse such information for a much longer period of time, accessible to anyone around the globe.

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