A better life for women affected by late effects of breast cancer treatment

Breast cancer is the most common cancer disease among women in the Western world. However, fortunately the available treatment options are so good that most patients survive.

In Denmark, approximately 60,000 women are diagnosed with breast cancer and a great part of these are affected by one or more late effects directly related to the treatment. The late effects can be of physical and / or mental character and include fatigue, pains, sleep disorders, depression, cosmetic inconveniences, anxiety, PTSD, reduced mobility of the shoulder and edema.

Often, patients are affected by several of these late effects, which in many cases persist for many years. It reduces the patient’s life quality and makes it difficult to return to pre-cancer life.

The mean age of women with breast cancer is low compared to other types of cancer and therefore, the affected women will in many cases live with the effects for many years. When completing a cancer treatment program, the patients who are affected by late effects often fall between two chairs. The reason is that the treatment concludes when the cancer has been cured and an unknown share of women are left with underexposed and untreated late effects.

The treatment of breast cancer is now so successful that we face an increasing problem with many cancer survivors affected by late effects. It is not only related to breast cancer but a problem we see in various types of cancer diseases. However, being one of the most common cancer diseases and having a positive survival rate, the problem is especially true for this type of cancer. - Peer Christiansen is Professor, Consultant, DMSc Plastic and Breast Surgery at Aarhus University Hospital.

In close collaboration with some of the most distinguished cancer researchers in Denmark, Enversion has developed a digital solution that aims at the patient as well as the clinician. The solution is a tool that enables the patient to track her care trajectory and register own experience during and after the treatment. Because the tool is based on large amounts of data, the patient will be able to compare and share her care trajectory with other patients. This way, the patient will not be alone but can share knowledge with like-minded women and thus recover energy to have the good life back. And precisely involvement and use of the so-called PRO data (patient reported outcome-data) is crucial for this project. Today, patients are “only” being heard in their conversations with the clinician. With these new tools the patients will be heard before, during and after the care trajectory, and not only when time is scheduled with the clinician.

“The collaboration with Enversion, that not only generates data for research but also helps clinicians monitor the patients’ symptoms and wellbeing over time, has the potential to become of great importance to the patients. In this connection, we are particularly excited about the possibilities of trying out Machine Learning as a possible tool for the identification of patients at risk of developing late effects and of the interventions and treatment that will be the most optimal for the patients concerned. With deep knowledge of the healthcare sector and experience in collaborating with both clinicians and researchers, Enversion is the ideal collaboration partner.”
Hugh James Robert Zachariae, DMSc., Professor at the Department of Psychology and Behavioural Science, Aarhus University, and the Department of Oncology, Aarhus University Hospital.

The project shows that it is possible to open for a data room shared between patients and clinicians and among the patients themselves. And the patient has a clear picture of what will happen next and further on in her treatment. With a National Center where data is collected to such an extent as here, there will be a basis for making interventions in the very early stages of the disease. Everything to prevent the late effects of breast cancer treatment.