Patient organisations, healthcare professionals and researchers joined forces today to present the National Cancer & Life Action Plan. Their message? Living with and after cancer is about more than survival. These experts, including researchers from the University of Twente, have come together to form the Cancer Survivorship Care Task Force.
In cooperation with various partners, the University of Twente has completed several projects that focus on patient care after breast cancer treatment. Others are still ongoing. One such project is INFLUENCE, which centres on a predictive model that estimates the risk of relapse. This model is being further developed as part of a Pioneers in Health Care project. The risk of developing a second breast tumour is one focus of this project, which is also looking at ways to visualise this risk to make it readily comprehensible to everyone concerned. In addition, Santeon’s Experiment Outcome Indicators project is focused on incorporating risk into decisions taken jointly by the physician and the patient on the frequency, duration and other relevant aspects of follow-up checks. The ways in which various presentations of this risk may affect the nature of follow-up checks are being examined in a study called SHOUT-BC. An app which focuses specifically on influencing patient perceptions of fatigue is also being developed: the IVY app. In addition, the University of Twente is working on an app which teaches patients to cope more effectively with the disease by exercising self-compassion: Compas-Y.
Prof. Siesling of the University of Twente explains: ‘Alongside these aftercare-related projects, a major study on fatigue after breast cancer is currently underway: the PARTNR project. We are developing a personal recommender system which advises patients on the most suitable treatment, based on their personal profile and risk of fatigue. Data from the PSCCR cohort is being used in this project. Meanwhile, the AMICUS project is looking at the use of artificial intelligence in the assessment of diagnostic mammograms for breast cancer patients.’
There are 800,000 people in the Netherlands who are living with cancer or who have had cancer at some point in their lives. This number is growing, and by 2030 it is expected to reach almost one million. The survival rate for many types of cancer has increased significantly in recent decades due to better options for detection and treatment. At the same time, research is providing an increasingly clear picture of how cancer and cancer treatments adversely affect a patient’s quality of life. These adverse effects include severe fatigue, fear of relapse, damaged nerves (neuropathy), problems with sexual intercourse and relationships, issues at work, and financial problems. Some treatments can also increase the risk of cardiovascular disease or of developing another form of cancer. This increases the burden of disease and can lead to a shorter life expectancy.
Many people are having to cope with the effects of cancer, some of which are long term. Living with and after cancer is about more than survival. It’s also about living your life. About participating in society as fully as possible during and after cancer treatment, in ways that give meaning to your life. This conviction lies at the heart of the National Cancer & Life Action Plan.
The researchers who participated in the plan have a clear message: knowledge about the effects of treatment and how they might be prevented needs to be shared more effectively. In this regard, it is important that data is readily available in digital form both to the patient and all healthcare providers involved, so that care can be coordinated more easily. Each and every patient should also have a single point of contact who can answer questions and provide appropriate referrals.
The National Action Plan was launched on 11 September 2020 at the webinar conference on Cancer & Life. The University of Twente wholeheartedly supports this initiative and endorses its viewpoints, along with IKNL (a Dutch quality institute for oncological and palliative research and practice), the umbrella organisations for Dutch hospitals, healthcare providers and patient organisations. Only by working together can we improve the chances of survival and quality of life of both current and former cancer patients.