The incidence of cancer is steadily rising. Fortunately more than half of cancer patients in developed countries survive 5 years or longer after their diagnosis of cancer. Cancer survivors have complex and specific needs and a proportion of them is experiencing long-term or latent side effects as a consequence of cancer and cancer treatment.
Explanation of the topic
From a medical viewpoint, we are focused on posttreatment surveillance after curative-intent surgery and adjuvant therapy (systemic therapy and radioatin therapy, when indicated), to identify disease recurrence and to evaluate possible major therapeutic complications. Next to that surveillance is aimed at detecting possible new neoplasms. In general we perform tests (physical examination, laboratory and imaging tests) according to specific follow-up guidelines in each type of cancer. By performing follow-up visits we try to detect cancer recurrence and bigger issues that may arise after curative-intent treatment. Frequency and intensity of follow-up visits and tests varies according from the time of conclusion of the curative-intent treatment. Health care professionals are well aware, that performing routine tests adresses major issues, but it is not a truly holistic approach. Some specific needs are in everyday clinical setting often overlooked.
With limited time available for check-up visits patients sometimes forget to mention some issues they have. We also notice that they sometimes are not able to define or did not notice some minor problems they experience and sometimes they also do not attribute these problems to the possibility of cancer recurrence or the cancer treatment they received.
Over the past decades many questionnares have been devised in connection to health-related quality of life, but it is hard to perform and properly evaluate them in the limited amount of time on check-up visits. Next to that the questionnaires would have to be performed in regular intervals and analysed to reveal any deviation from their baseline values. Therefore researchers in Persist project are aiming to develop a tool to adress all aforementioned problems.
Cancer survivors have unmet needs, especially when they are returning to everyday life routine and to their working enviroment. After the acute treatment phase, when they are in constant contact with health-care professionals, a planned regular check-up follows in a couple of months in accordance with follow-up guidelines. Estimation is that approximately one in four cancer survivors tackles moderate to severe physical or psychological challenges after the treatment has ended. The latent side effects caused by cancer and cancer treatment are sometimes long-term and are influencing every aspect of their day-to-day life.
On average, a medical doctor has 7 minutes per patient on check-up visits. In this seven-minute time span patients want to please the doctor and they rarely point out all the medical issues, especially if they are minor. So even when they have a follow up 6 months after treatment, doctors and patients have a limited amount of time to discuss all the issues.
Researchers from University Medical Centre Maribor are very engaged in the project Persist H2020 and the possibility of developing a platform that would record relevant changes in health data. This information can help doctors to sense new, minor health issues and use the limited 7 minutes to the fullest. There are 21 staff members included in the project: medical doctors, nurses and coordination support.
With Persist project we strive to design a platform that would enable us to collect all the relevant data regarding the health-related quality of life of our patients. This would be of tremendous importance to all health-care providers, enabling us to treat our patients in comprehensive and coordinated manner.
What is the feedback from our cancer survivors included in the Persist H2020 project?
- Our cancer survivors are eager to better their health with trying to prevent cancer recurrence and arising of new comorbidities. They adopted healthier diet, included exercise in their daily life and they actively participate in the project. They record and point out malfunctions regarding the application or the smart band and they actively participate with answering the surveys.
- Majority of cancer survivors joined the project to remain in close contact with their medical doctors, since they will have 3 additional check-up visits. Another reason for participating was the performing of circulating tumour cell (CTC) analysis. They also have a conversation with the coordination team about their well-being. Their positive feedback is mainly connected to the possibility of having more follow-up.
- Of the 40 recruited cancer survivors, only 3 left the project due to recurring negative feelings from the time of the acute cancer treatment period and that they felt stressed out due to obligations connected to the application and smart band. One participant left the project due to disease recurrence. Other 36 are after first 6 months still interested in the data they can extract from application and are still using the band and application.
In the Persist project we aim to improve quality of life related issues of cancer survivors by addressing the long-term effects of cancer and cancer treatment. We are doing that by trying to develop a platform that is going to enable a quality collection of information that can help health-care professionals and cancer survivors around the globe.
Author: UKCM Maribor:
- Matej Horvat MD, lead researcher in project PERSIST,
- Maja Molan, coordinator of project PERSIST
Media: www.ukc-mb.si (Tw, LinkediN, FB)