Based on an article by Dr. Margarita Tarein, source: https://acibademcityclinic.bg/tokuda/blog/detaili/da-pridruzhavash-blizuk-v-bolestta

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The disease requires changes in the daily life and plans not only of the sick person, but also of his family and close people. Spouse, partner, child, brother, sister, friend, colleague or neighbor, they are a valuable support for this person. Sick people share how important it is for them to be accompanied and emotionally supported by their loved ones during the treatment process.

Many questions arise in connection with the disease and its consequences, to which there is no unequivocal answer:

How can we reduce his/her suffering?

How can we be as useful as possible to him/her and at the same time preserve the things that are important to us?

How can we make sure that the disease does not become the main focus of our daily life and our relationship with the patient?

In other words, the question is how, despite the circumstances, can life continue as fully as possible?

The appearance of the disease causes very strong emotions – sadness, despair, anxiety, anger and a sense of injustice, loss of a sense of security, predictability, etc. These painful feelings are completely normal and understandable, but they are difficult to manage, especially in the beginning. It takes time for a person to get used to all the changes that are happening. This is a long and difficult process. Making sense of and sharing emotions are the first steps to dealing with them. They need to be identified so that adequate resources can be mobilized to deal with them.

It is very likely that relatives will have to deal with fluctuations in the mood of the sick loved one. Physical suffering, changes, and limitations can make him irritable, withdrawn, and sometimes self-centered. These are normal reactions of sick people, which should not be taken “at face value”. Resentment and harsh words can cause anger and bitterness in loved ones. It is important that they try to understand that these conditions are not directed at them personally but are a natural consequence of the disease. This understanding can help relatives not to withdraw into the offense and not to hinder the dialogue with the patient.

Physical changes

Illness and treatment cause physical changes that can significantly alter a patient’s self-esteem – they may experience feelings of discomfort, self-doubt, and even shame. Maintaining a sense of self-worth and dignity is among the most important aspects of coping well with illness, and this is largely achieved through the attitude of loved ones towards the ill person. They serve him as a mirror, and it is essential for him, looking around in the eyes of others, to recognize himself as he is.

Redistribution of roles

Illness usually necessitates a change in the family organization. All family members, including children, to one degree or another, face daily changes of a domestic, organizational and financial nature that could cause tension. The redistribution of roles can lead the patient to lose his usual function in the family, which will have a very negative impact on his self-image and hence on relationships. Excessive care and attention to the patient can further discourage him. He may feel useless or overly dependent on others. In such situations, conflicts easily arise. Maintaining his usual position in the family, regardless of the physical changes that have occurred, is a relief not only for him, but also for those close to him.

The children

From an early age, children are sensitive to all the events that happen in their immediate environment – they perceive them, but do not understand them exactly. It is recommended that the child be informed about the illness of a close person (parent, grandmother, grandfather, or other person) with explanations adapted to his age. If nothing is mentioned in the family about what is happening, it is possible for the child to start feeling anxious and isolated, as well as to form his own, sometimes much more frightening ideas that he does not share. At first glance, it may seem that the child is not interested in the disease, but changes in his behavior appear, such as difficulties in school or kindergarten. Talking to the child not only gives him an explanation for what he feels and notices, but also restores his sense of security and gives him the opportunity to share his thoughts and concerns.

Limiting the scope of the disease

The disease tends to occupy a central place in the minds and relationships of those around the sick. The risk of this is that it overshadows all other aspects of life and communication and takes up residence where it might not be. No matter how difficult and oppressive the circumstances are sometimes, it remains the choice of the individual to try as much as possible to compensate and limit its encroachments – to accept what is missing and to look for what is helpful and valuable.

Because the fight against the disease in its essence is the fight to preserve the joy of living.

The diagnosis of cancer and subsequent treatments can have a large impact on patients’ psychological well-being. Along with the physical remnants of treatment, cancer survivors often continue to grapple with anxiety and depression. Moreover, multiple studies have shown that symptoms extracted from conversation can greatly improve the accuracy for disease identification and disease progression (Picone at al., 2020). Furthermore, self-reporting of symptoms can result in significant bias in reporting experiences.

In PERSIST project, MRAST framework was developed by UM to extract to analyse and ‘annotate’ the risks as expressed by patients in their diary recordings. Main assessment tools are still using traditional methods in clinics including interviews and specifically designed questionnaires (Kroenke et al., 2001). During the interviews, patients show numerous verbal and non-verbal expressions about themselves. Noticing and understanding of those expressions are mainly based on the experience and skills of the staff. Thus, automatic depression recognition tools should be integrated into clinical workflows for overcoming above-mentioned issues. The importance of developing objective, reliable and effective assessment tool as a complementary to psychometric questionnaires for depression recognition was stated before (Cuthbert and Insel, 2013). Thus, the contribution of multimodality approach to observe the signs of depression and early detection of the mental disorders should be considered in the clinical workflow.

MRAST framework includes mainly 5 main steps:

1. Retrieving the non-annotated patient diary recordings from OHC platform.
2. Extracting the text (transcription) and audio (speech) from the videos via ASR
3. Sending the text, audio and video components to Multimodal Depression Analysis Framework (developed by UM) to find the possible patient depression signs.
4. Sending the text to the SYMP Chatbot to extract the risk factors (symptoms). SYMP Chatbot returns a list of possible risks (symptoms) sorted by the probability.
5. Storing the risk factors and depression results together as a Composition FHIR resource to the OHC FHIR server.

Automatic speech recognition (ASR) system SPREAD is built on an end-to-end Connectionist Temporal Classification-based deep neural model (e.g. like DeepSpeech model). The model is called end-to-end because it needs speech samples and corresponding transcripts without any additional information. This approach allows finding an alignment between audio and text. Speech recognition was achieved for all PERSIST languages (EN, SI, ES, RU, LV, FR).

Multimodal depression analysis gets text, audio and video as input and classify the patient diary videos as depressed or not by using different artificial intelligence algorithms (SVM, RF, LSTM WOG, LSTM WG). In MRAST, word2vec model was used to extract the text features; Covarep library was used to extract audio features and openface library was used to extract facial features from video.

MRAST framework

The Symptoma Chatbot is an interactive conversational agent, handling free text inputs for unsupervised patient history taking and information collection. Standard healthcare admission questionnaires are very structured – they can be redesigned to be more sensitive but are not able to adapt to things that are not foreseen, thus missing many potential hints in the anamnesis. Symptoma’s chatbot adapts to each question based on patient input. E.g., if you enter “headache”, it automatically asks for “fever” as fever is the most common symptom to occur with headaches. If you enter “undercooked eggs”, it asks for “nausea”, “vomiting”, and “abdominal pain”. Therefore, it dynamically adapts to the patient’s input delivering a patient-centric conversation, catching any data points which are related to the patients’ conditions. For PERSIST, SYM extended the database and localized in the PERSIST languages with a focus on oncological concepts, quality of life subjects, as well as layman jargon.

The detailed scientific results of MRAST framework were recently published by UM team (Arioz et al., 2022). With this study, we provided objective assessment for depression and identification of risk factors to support the clinical decision. The results of the PERSIST patient videos will be published in the final report of the PERSIST project.

Dr. Izidor Mlakar and Dr. Umut Arioz

The University of Maribor (UM), Slovenia

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References:

• Arioz, U.; Smrke, U.; Plohl, N.; Mlakar, I. Scoping Review on the Multimodal Classification of Depression and Experimental Study on Existing Multimodal Models. Diagnostics 2022, 12, 2683.
• Cuthbert B. N. and Insel T. R., Toward the future of psychiatric diagnosis: the seven pillars of RDoC. BMC Medicine, 11, 126, (2013).
• Kroenke, R.L. Spitzer, J.B. Williams, The PHQ-9: validity of a brief depression severity measure, J. Gen. Intern. Med. 16 (9), pp. 606–613, (2001).

• Picone, M., Inoue, S., DeFelice, C., Naujokas, M. F., Sinrod, J., Cruz, V. A., … & Wassman, E. R. (2020). Social listening as a rapid approach to collecting and analyzing COVID-19 symptoms and disease natural histories reported by large numbers of individuals. Population Health Management, 23(5), 350-360.

Author: CHU de Liège

Even prior to receiving funding from the European Commission, the Liège University Hospital (CHU de Liège) was particularly interested in the PERSIST’s concern for life after cancer. At present, our hospital wishes to pave the way through PERSIST in order to help the Belgian government in its role regarding the quality of life (QOL) of patients who have completed their cancer treatment.

Once their treatment is finished, all Belgian cancer survivors have follow-up consultations at least every 3 to 6 months. According to the state of the patient, consultations may become progressively more spaced. In Belgium, all these consultations are reimbursed up to 80%, allowing patients to pay only 12€ per consultation. Despite our social security that many countries envy us, cancer remains in Belgium a financially heavy or even unbearable burden for some patients. Especially when various medical costs are accompanied by an income decrease due to long absence from work.

Thus, if patients have great difficulty with payment, CHU de Liège allows them to spread their bills.

Belgium has implemented a Cancer Plan in 2008. It encompasses several actions that benefit both oncology patients and cancer survivors within our hospital. Among them, free of charge psychology consultations, which also cover those related to onco-sexology. The Cancer Plan also offers free consultations with a neuropsychologist for patients with memory loss or any other cognitive disorder that may have appeared during or after the cancer treatment.

Moreover, due to strong demands of the CHU Liège psychologists, cancer survivors suffering from anxiety disorders, depression or alcohol dependence can be referred to frontline psychologists working outside the hospital.

The fee of a frontline psychologist in Belgium is 76 euros/consultation. Nevertheless, to support this type of patients, the Belgian government allows them to benefit 6 consultations/year at a cost between 5 to 11€ each. If necessary, at the end of these 6 sessions, the frontline psychologist can refer the patients to a specialist psychologist who will be able to see him/her 6 more times/year for again 5 to 11€/consultation. Thus, in total, a cancer survivor suffering from anxiety, depression or alcohol dependence can benefit from 12 sessions/year with a psychologist for a modest price.

Unfortunately, frontline and specialist psychologists can only charge for 8 reimbursable consultations/week. Thus, extra efforts are claimed to the Belgian government from cancer survivors so that psychologists can increase the number of these type of consultations.

Cancer patients including survivors are entitled to 8 consultations with a tobacco specialist. The first of these consultations is completely reimbursed. To help patients quit smoking, the following 7 consultations are reimbursed at 66%. Thus, cancer survivors have to pay only 10€/consultation.

Importantly, the scientific literature points out that physical activity is one of the major factors that may improve the QOL and psychological health in cancer survivors. Following this recommendation, our hospital created a physical rehabilitation program offered to survivors of breast cancer and colorectal cancer since 2014. This program has been very successful with patients who pass a stress test allowing them to register for physical activity. The price of each session varies between 13 and 18 €, however the cancer survivor only pays between 6 and 8 €. Currently 50 people/year benefit from these revalidation sessions at CHU de Liège.

Moreover, CHU de Liège rehabilitations have paved the way  to offer physical activity adapted to cancer survivors living in other municipalities in the Liège region.

This physical exercise program is a unique agreement between our hospital and the Belgian Ministry of Health. Thus, the program is not offered to all Belgian cancer survivors. Nevertheless, the excellent results already obtained could lead the Belgian health authorities to promote reimbursable physical exercise for all cancer survivors who can undergo physical rehabilitation.

The CHU de Liège recently opened the doors of a 7-storey Comprehensive Cancer Center dedicated to cancer treatment and research. Inside the center, OASIS Wellness center offers to cancer survivors free of charge well-being activities for one year after the end of their treatment. The project wishes to place the human being at the center of all considerations through the implementation of activities of sensations, emotions and better self-awareness. Concretely, OASIS allows patients to benefit from massages, gain self-image, a kitchen for dietary advice and the preparation of dishes adapted to the situation of the cancer survivors. OASIS also offers stretching, relaxation, and yoga sessions as well as group discussion. Notably, family caregivers can also participate free of charge in some of these activities.

In addition, our hospital has a long experience in training patients in self-hypnosis. Our hospital systematically offers cancer survivors self-hypnosis lessons through 8 sessions (€39/session).

CHU de Liège runs at present a non-ordinary states of consciousness research project entitled “Hypnosis and cognitive trance on cancer patients: impact on quality of life and neurophysiology”. In the frame of this project self-hypnosis, meditation and cognitive trance are at present free of charge for cancer survivors. The project aims to evaluate the therapeutic effects of these three states of consciousness on pain, sequelae and side effects of cancer treatment. Improving the quality of life of cancer survivors through these techniques could enable them to be integrated into the post-cancer care pathway in the future.

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