PROFIEL study contributes to quality of life of people with cancer
Better care for cancer patients and survivors. That is the purpose of the PROFIEL study, an international collaboration to collect and share data on the quality of life of cancer patients and survivors. The study was initiated in 2004 by researchers of Tilburg University and the Netherlands Comprehensive Cancer Organisation (IKNL). Psychologist Dr. Floortje Mols is one of the three project managers and likes to talk about PROFIEL: “It is a wonderful example of academic and practical collaboration that benefits the quality of life for people struggling with this serious condition. In our research, patients and their best interests always come first.”
PROFIEL was developed as an open platform for data collection. There is close collaboration with doctors, nurses, and the Dutch Federation of Cancer Patient Organizations (NFK). The aim is to provide optimal care for patients and as close to home as possible. “We are conducting different studies as part of PROFIEL. After all, there are different kinds of treatments for each type of tumor and therefore possibly also different short and long-term side-effects. The PROFIEL system is used to a greater or lesser extent in every Dutch hospital. In the area of thyroid tumors alone, thirteen Dutch hospitals are collaborating. Our research is pre-eminently multidisciplinary. PROFIEL’s researchers have very different backgrounds. There are psychologists, epidemiologists, health scientists, doctors, exercise experts, communication experts, and nutritionists. Approximately 25 researchers and seven research assistants work for PROFIEL, and all of them are women,” Floortje Mols says with a smile.
Open and accessible
Providing a good overview of an enormous amount of data is an important added value of PROFIEL. Sharing data openly and effectively is also part of our philosophy, Floortje Mols explains: “Researchers from all over the world can request data and use it for research, but it goes further than that. The whole registry is used in various hospitals. So if other researchers want to use our registry for their own study, they can. The registry system can also be copied. This has so far been done by twenty hospitals in the UK. Patients’ interests are always key; they benefit most from the sharing of data and methods.”
Both the PROFIEL data and the registry system itself are accessible for researchers and doctors
Quality of life
Approximately 30,000 patients have now participated in a PROFIEL study. They are actively recruited to that end by care professionals. “Involving patients is very important. We ask quite a lot of them, such as filling out questionnaires, taking blood samples, wearing a Fitbit, weighing themselves, or keeping a food diary online. Their commitment is crucial. We involve patients in setting up the studies, they get insight into their answers to questionnaires, and in the long run, of course, we strive for better care for cancer patients. Doctors know better what works in a particular situation and there is more awareness of the psychological impact of a treatment and of quality of life. For instance, a treatment may give a 1% better chance of survival, but may have very serious or debilitating side effects. Information from studies like those of PROFIEL show how this works and can help healthcare providers and patients to make an informed choice of treatment. Incidentally, in collaboration with Centerdata, we put the same questions about well-being, ailments, and quality of life to a control group of healthy people. This will gives us a better understanding of what is caused by cancer treatment and what might also just be part of aging or a particular life phase.”
Treatments can have very serious or debilitating side-effects. Our insights help patients make an informed choice
People living with cancer come up against much more than just health problems, Floortje Mols says: “Our research showed how difficult it is for cancer survivors to take out life insurance for a mortgage. Many people struggle with this; they have the feeling that their lives are on hold. As a result of our research, this problem is on the political agenda and questions have been asked in Parliament. The NFK has lobbied a great deal based on these and other data, which has led to the ‘clean slate’ scheme, whereby cancer survivors can take out a mortgage after some time.”
Thanks to the ‘clean slate’ scheme, cancer survivors are able to get a mortgage again
The PROFIEL registry is a platform for data collection on cancer patients. PROFIEL stands for academic research into the quality of life of cancer patients and survivors. To that end, researchers of the Netherlands Comprehensive Cancer Organisation (IKNL) and Tilburg University collaborate with medical specialists of all hospitals in the Netherlands. Within Tilburg University, the Department of Medical and Clinical Psychology coordinates the PROFIEL activities. More information: https://www.profielstudie.nl/ (in Dutch). Twitter: @PROFIELstudie
Within Tilburg University, a group of enthusiastic and committed researchers who investigate the psychosocial consequences of cancer. They work together to gain insight in the psychological and biological processes behind, for instance, fatigue, anxiety, and pain.
Date of publication: 9 September 2021