skip to Main Content

Introduction

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.

Conclusion

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)

Interview with Evgenia Aleksandrova, Patients’ consultant, Chairperson of the Association of Cancer Patients (APOZ), Patient advocate and consultant certified by ECCO, ESMO, ECPC, UICC, EUROPA DONNA, National Representative of the European Breast Cancer Coalition EUROPA DONNA, Contact person for the CANCER MISSION of the HORIZON EUROPE Framework Program

Mrs. Alexandrova, what does the modern picture of cancer look like through the patient’s eyes?

The picture of cancer will always look embarrassingly frightening to the patient and his loved ones, no matter how modern. Hardly anyone doubts that. It is for this reason that care for cancer patients needs to be enriched and expanded in the direction of information, navigation and personal assistance in order to give society time to get used to the understanding that during the patient’s journey there is a lot of supportive care, clear rules and organization of treatment. Over time, this will reduce the primary burning anxiety in patients and their loved ones and will allow for their earlier personal mobilization in favor of the healing process.

Do you think that the measures taken globally and nationally will be effective (European cancer plan, national cancer plan)?

Let’s clarify what effectiveness we expect from these measures! If we consider the reduction of the public burden of cancer – costs, loss of life, social burden – definitely YES! I expect these global measures to limit late diagnosis and have a positive effect on the life expectancy of patients. But any anti-cancer plan must reflect and ensure compliance with human, seemingly non-medical needs of the patient. Supportive care most often increases the results of timely and effective treatment, maintains the patient’s spirit and fully involves him in the healing process. Awareness that he is part of the treatment team motivates the patient, increases his trust in the medical staff, engages him in his own healing with a conscious responsibility and striving for control and victory over the disease.

What do people with cancer need today?

First of all, information – about the fact that there is organized cancer care, about its structure, about the right path of the patient in this segment of the health system, they need essential list of specialized cancer treatment facilities and experts in various medical specialties. In addition, the patient needs professional psychological assessment and assistance, as needed, a clinical social worker, positive examples of successful patients, a supportive peer environment, navigation and accompaniment throughout the treatment process. It is not insignificant, but it is achievable to organize and provide this type of care. There are enough examples and good practices to follow.

And what are the needs of people who have survived cancer after completing their treatment? Are they adequately addressed?

Wonder question! Usually, patients who have completed treatment are subject to medical follow-up. But it is not the subject of public attention how these people continue their lives, which have turned in an unusual direction with the onset of the disease. Some of them lose their jobs, others experience cataclysms in their family relationships. In practice, they are expected to prove that they are complete again and have the right to move forward without being reminded at every turn that they have had cancer. They are subject to discrimination in every important personal decision – to change their job, to buy a home, to develop in another professional field. Clear regulation on these issues is needed, as well as an element of the anti-cancer plan!

Do you believe that modern technology can help the lives of people with cancer and people who have survived cancer? Do you know examples in this regard (eg mobile applications, technological innovations in diagnostics, use of artificial intelligence, etc.)

Basically yes. New technologies occupy an increasing part of the conditions in which we live and exist. They are expected to improve our functioning in various aspects. But with regard to cancer patients, living contact with a human being will remain unparalleled, and for a long time to come people will receive the most tangible help and support in this way.

Interview taken by Alexander Milanov, Program Director at National Patient’s Organization, Bulgaria

Back To Top