February 15th is the annual International Childhood Cancer Day. This year, at the International Clinical Research Center (ICRC), we want to highlight the needs of cured paediatric patients who are dealing with the consequences of their treatment in adulthood.
Since 2016, the Outpatient Clinic for Oncology Follow-up Care under the direction of Tomáš Kepák, M.D., Ph.D., has been operating in the premises of St. Anne’s University Hospital Brno (FNUSA). It offers care to patients who have undergone oncological treatment in childhood. It responds to the development of knowledge about the long-term effects of treatment on the later state of immunity, cell aging, or the premature development of chronic diseases. In line with the current European trends, the follow-up care services are now moving into the psychosocial field alongside purely medical care. In particular, our clinic has expanded its services to include psychological care and nutritional counselling. In this way, we also support patients in taking responsibility for their own health care in a broader sense.
What problems do patients face? How do they feel in relation to the general population? And what are their specific needs? One of the new team members, psychologist Jakub Kozák, offered us his insights.
Photo: Mgr. Jakub Kozák
How did you come to work at the Outpatient Clinic for Oncology Follow-up Care at FNUSA?
Dr. Kepák invited me to join the outpatient clinic as a member of the future psychosocial team, in order to map the needs of patients from a different perspective than has been customary so far. The current European trend is similar. Dr. Kepák and I know each other from the Department of Paediatric Oncology at the University Hospital Brno. I have long been involved in the field of child psychology and psychopathology. We felt that cooperation could be beneficial, even though the practice primarily focuses on adults, because many topics overlap with our category of patients.
What is your role within the clinic?
I offer screening for mental health needs to patients. If I spot a problem that falls within my area of expertise, I try to treat it in some way. Acute conditions can be dealt with on a short-term basis. However, because we do not yet have the capacity for long-term care, we then try to transfer patients to regional specialists as close to where they live as possible. Clients come to us from a wide area of Moravia, sometimes even from Bohemia. Our aim is to create a network of collaborative centres with colleagues from other outpatient clinics to provide the support patients need.
So, at this point, are you able to offer patients the specific names of local colleagues to take over their care?
In some places, yes, in others we’re still making contacts. Networking is a longer-term process. There are also areas where psychological care is generally scarce, but we are trying to work with that.
Do you offer services to all patients of the clinic, or does it depend on referrals from doctors?
I try to reach out to everyone. If I am unable to meet someone directly in the outpatient clinic, for example because of the schedule of examinations that patients undergo with us, my colleagues mention the possibility of a psychological consultation.
What age group do you work with?
I meet with the whole spectrum of people. We have young adult patients, five years out of treatment, but also older patients, in their forties and fifties.
What difficulties do patients most often come in with?
With younger patients, around the age of 25, we often deal with their entry into adulthood, the possibility of becoming independent and setting rules towards their parents (family). A parent whose child has been in direct danger to life may subsequently be hyperprotective, that is, trying to protect their child too hard. This is a natural consequence of the treatment; however, it is important for the young adult to realise independence in life as far as possible, not to be bound by the anxious care of the parent or their efforts to control potential risks.
Another set of difficulties are concerns about the future, issues of family planning, often reproductive health and the very possibility of having children at all. There is also the fear of recurrence of the disease and the concern about the illness of one’s own child. There are often anxieties that may already stem from the personality make-up of a particular individual, and these can be greatly exacerbated by treatment.
Do you ever encounter the opposite spectrum of experiences, e.g. positive patients who are able to take life in their stride because of their distressing experience?
I’m glad you mention that. In our work, we always hope that even when a child is hit by such a powerful experience, it may not always lead to permanent major limitations and distress, but it can move him/her on. When a patient like that comes along, it’s always a wonderful encounter. Dr. Kepak often calls our practice a “clinic of joy” when we see many patients, who have gone through challenging treatment, reach important life milestones, even though they may have doubted it during treatment. There are also those who completely reassess their value ranking. This is especially true for those who are affected by treatment during adolescence. They think a lot about their situation, and I dare to say they often come out enriched.
Is it possible to distinguish traumas and experiences related to treatment from others? Or is that not even desirable and you approach your patients’ problems holistically?
We cannot always be sure that a certain problem is primarily related to the treatment, but we try to make that distinction. We do, however, take it as a kind of extra for patients with this difficult experience, that they have the opportunity to address their issues, if they wish to do so. This relates both to memories and to their own overall perception of their quality of life in the current period. Our limit for now is our capacity. So, we need to consider the extent to which we will develop support within our outpatient clinic and when we will engage with a network of other professionals.
Do you also work with patients’ families?
Adults are in varying degrees of autonomy in the context of their relationship with their parents. Our patients have at some point used parental support quite extensively on various levels and there comes a time when it would be desirable to gradually loosen this bond. Sometimes it is successful, the parent keeps his distance and gives the child the space to find the optimal degree of autonomy naturally. Other times it is less successful, and so we try to work with that. We also have a group of patients who have more significant health limitations due to treatment, such as cognitive or motor impairment. Some parents sacrifice so much that they permanently subordinate their lives to the child’s needs, they are available to the child, they care for the child nonstop. We then address the model of how patients could exist without the majority presence of the parent, and thus have the possibility of realization without parental support.
What about partner relationships?
We are addressing that just occasionally, for the moment. There are questions about the extent to which the partner needs to be informed about the patient’s past. I remember a case where this information did not come up at all and we discussed to what extent the patient wants to inform the other person about the treatment at that stage of the relationship, what his/her concerns are and how this topic can be opened in partner communication.
What kind of mental hygiene do you recommend to your clients?
All of us, regardless of the presence of serious illness or treatment, benefit from taking care of our own resources. Thus, I find it important to think of my own body and mind in self-care, while doing at least a little something every day to feel good. It doesn’t take a lot of time or energy, just that focus and setting aside the essential minimum is very important. Part of it is prevention, striving for a healthy lifestyle. In addition, with our patients, my goal is always to pinpoint an area where they can experience usefulness, so that they can live well and see their own value even with a possible handicap.
You mentioned the European trend towards comprehensive care for cancer patients and survivors. It reminds me of Prof. Koutecký, the founder of paediatric oncology in the Czech Republic, talking about the need to see patients in their whole context, including psychological support. Do you think we are succeeding?
I have a lot of inspiration in palliative care, where this trend of a holistic approach is very strong. I now see a similar direction in our efforts in the clinic. We have to try to do this, even if it sometimes means facing various attitudes of other professions towards psychological work, perhaps some prejudices. Part of this is due to the less tangible way we work. And I hope that we are succeeding – this must be decided by patients and colleagues from other disciplines. In our clinic we are certainly making efforts to achieve it.
Photo: the Outpatient Clinic for Oncology Follow-up Care at FNUSA, in the middle MUDr. Tomáš Kepák, Ph.D.
Are you the only clinic in the Czech Republic with similar services?
There is another center at the Motol University Hospital in Prague, with which we cooperate. We are currently going there for an internship to harmonise care concepts and to discuss foreign trends.
Does your work have an outreach to the public or do you develop recommendations for professional societies?
We are just starting with outreach. For example, we are in contact with patient organisations. I also see the importance of education in schools. We know of patients who have had a very difficult return to school. There is a need for an appropriate educational approach to the specific needs of the child in/after cancer treatment, but also a need to work with the class and integrate the individual who has gone through a challenging experience – often threatening their own life and its long-term quality.
What topics do you think are taboo in society today in relation to childhood cancer treatment?
I see a certain degree of disadvantage for the group of cured patients. We are trying to work towards equal opportunities for them. Many cured patients are actually healthy after cancer treatment, yet they struggle with discrimination. This concerns, for example, the possibility of arranging a mortgage, insurance, employment opportunities. These people want to live a full life and have a perspective.
Is there a story that sticks in your mind?
I can think of one outpatient who was significantly affected in his own self-sufficiency by treatment. We are now working on getting parents to allow themselves to seek appropriate help. We are addressing how much further care they will provide and to what extent they will use social services support. The reason this particular case comes to mind is the poignancy with which parents have to process major losses in their lives. One minute they are raising a child they believe will take care of itself in adulthood. Then a moment comes that somehow takes away that relative security and they have to reorient their approach. They are also faced with the fact that the social system cannot offer them enough support. We want to seek the highest possible level of life fulfilment for these patients, for the families. I think that as a society we should do more about this.
The stories you encounter must often be challenging. How do you maintain your own mental health?
I have a certain habit of working with stories that I keep within professional boundaries. But I also want to mention my family, who are a great support for me. I consider it a great gift, I would say a “life bonus”, that my wife and children carry with me this very service to people with difficult life stories. It certainly changes not only my outlook on life and the world, my whole family shares it with me. At the same time, I couldn’t do without my personal resources, which for me are music, the creative process in general, and sports.
How can clients find your help? If we wanted to conclude by offering a helping hand to those who are hesitant or unfamiliar with aftercare options?
We are working on better communication of our services externally. As part of the process of completing treatment, patients are given information about where they can access follow-up care. We also have our own space on the FNUSA website and work with patient associations. If patients feel the need and are not yet in the follow-up system, I can definitely recommend it. In hyperbole, we compare it to technical inspection of a car – we offer a check of overall health, including my screening of mental fitness. We will certainly be happy if patients take advantage of this.
Thank you for the interview.
For more information and contacts for making an appointment at the Outpatient Clinic for Oncology Follow-up Care at FNUSA, please visit: https://www.fnusa.cz/pro-pacienty-a-navstevy/pracoviste/dispenzarni-onkologicka-ambulance/ (CZ only)
The clinis’s activities were part of the European PanCareLIFE project, which set out to improve the quality of life of children and young patients cured of cancer throughout their lives. This is now being continued by the follow-up project PanCareFollowUp, supported by the Horizon 2020 programme of the European Union (grant no. 824982).
Unique personality and top scientist: Jiří Damborský receives the medal of the Learned Society of the Czech Republic
A renowned expert in the Czech Republic and internationally, holder of several international patents, head of the Loschmidt Laboratories of the Faculty of Science of MU and the Protein Engineering research team of the ICRC, co-founder of the first biotechnology spin-off company of MU Enantis, holder of awards from the international scientific organization European Molecular Biology Organization, the American Howard Hughes Medical Institute Foundation, the national award Czech Head of Invention 2017 awarded by the Government of the Czech Republic and the MUNI Scientist 2020 award – this is all prof. Mgr. Jiří Damborský, Dr., who has also recently received the medal of the Learned Society of the Czech Republic. However, his great strengths are also his extraordinary humanity, empathy, and his willingness to appreciate and support every success of his team.
Photo: prof. Mgr. Jiří Damborský, Dr.
Prof. Damborský is engaged in protein engineering and development of software tools for identification and production of practically useful proteins. He has long been involved in modifying proteins so that these biomolecules are more stable and can be used more efficiently in industry and medicine. In addition to his research activities, he has an extraordinary ability to translate his findings into practice. Software tools developed by the Loschmidt laboratories are used globally in protein engineering with applications in biotechnology and biomedicine.
He is Professor of Biochemistry at the Faculty of Science, Masaryk University. He received his PhD in microbiology in 1997 and his habilitation in biochemistry in 2004. He has published over 250 original scientific papers in international journals. Within the ICRC, his team is also involved in the research of new drugs for dissolving blood clots in stroke. Damborsky has long been involved in the field of communication and popularisation of science and supports young talents in developing their scientific careers. His colleagues also appreciate the warmth with which he always motivates those around him and shows human interest in others in the team in addition to their work results.
The Learned Society of the Czech Republic has now honoured his achievements with the Medal for Merit for the Development of Science, which he received on 15 May 2023 at Karolinum in Prague. The entire team at the International Clinical Research Center (ICRC) extends its heartfelt congratulations to the Professor!
Photo: Loschmidt Laboratories team (source: https://loschmidt.chemi.muni.cz/)
Author: Marta Vrlová, M.A., MPH, Senior PR Specialist ICRC, marta.vrlova@fnusa.cz.
Media contact: Ing. Jiří Erlebach, Head of PR and Marketing Dpt, FNUSA Spokesperson, +420 543 182 006. jiri.erlebach@fnusa.cz.
Adam Williamson: The support I have at the ICRC has been phenomenal
He is 43 years old and holds 4 ERC grants. Since January, he has been working at the International Clinical Research Center (ICRC) of the St. Anne’s University Hospital Brno and the Faculty of Medicine of Masaryk University, where he is currently building his research team. In our interview we talked not only about what brought him to the ICRC, but also about the importance of scientific mobility or writing ERC projects.
Photo: Adam Williamson
You studied electrical engineering, but now you’re a neuroscientist. Was that the plan from the beginning, or did it just happen?
At the beginning of my career, I never thought that I would one day be a full-time neuroscientist. But I certainly couldn’t do what I do today if I didn’t have the education I have. I have a degree in theoretical electrical engineering. I progressed from being an engineer through many interesting research topics to neuroscience and focused on applying new technology to clinical research.
The field shift was mainly made possible by ERC grants. I was an engineer, but I got a project from the European Research Council to do experiments on mice that had our devices implemented. Today I have a clinical research grant, but I am certainly not a clinical neuroscientist who routinely works with patients. But maybe when we interview together in five years, I will be.
You’ve lived in many countries in your lifetime…
I was born in Canada, and moved with my parents to West Texas as a kid, where I did my undergraduate and graduate studies. I moved to Germany for my PhD and then to France. Subsequently, I travelled extensively between France and Sweden. And now I have settled down at the ICRC in Brno, Czech Republic. In order for scientists to do cutting-edge research, not only money is important, but also mobility, because it allows you to take advantage of the infrastructural advantages of the workplace, such as extremely expensive equipment or laboratories and other facilities.
Do you enjoy the new beginnings that come with every move?
Even though I live in Brno now, I still travel a lot, as I am involved in many scientific collaborations. I love travelling. New beginnings are interesting, I enjoy learning new languages and getting to know the culture of different countries. But I don’t see moving around Europe as a major change, because all countries have a similar culture in some sense and I know what to expect. Even if each country is different, it’s still Europe. I wonder what it’s like to make a “real move” and look at Asia, Africa or the Middle East for example. Not that I plan to, but it would certainly be a very different experience.
Do you think the ICRC will be your last destination?
It certainly has all the qualities to be one. I can say for sure that I will spend the next 5 years here. I have a big ERC Consolidator grant here and a few other smaller projects, so I really have a lot of money to do the research I want to do. The support I have at the ICRC is also phenomenal.
What were the main reasons that brought you to the ICRC?
The main reason was that the ICRC is a very friendly and welcoming host institution, with not only excellent scientists but also excellent administrative staff. They are all very supportive in giving me access to everything I need. A secondary reason is also partly personal. I spent a lot of time in Germany, so it feels familiar and reminds me of where I spent time with my children when they were young.
Do you have a specific example of a situation that surprised you by going smoothly?
When I arrived, I spent several weeks preparing documents for the ethics committee to work on my grants. We didn’t even have to wait a month for some of them to be approved. It’s not because it’s easy to get permission in the Czech Republic, but the system is very efficient. The Commission was very cautious about ethics and research safety. We answered all the uncertainties, and by the next day we had a reply that our document was provisionally approved, but we had to make some additional changes. And they were still apologising for taking so long.
You’re currently looking for PhD students, postdocs and technical staff, and you’re building a new research team in Brno. Is this the first time you’re building a team from the ground up?
It’s the second time. The first ERC Starting grant I got to start a research group was in Marseilles, France. I built a new team there, but then the end of the grant and the outbreak of the pandemic came together. Moreover, at that time all my students, except one PhD student, had finished their studies. Today they are postdocs all over the world and two of them are even at prestigious universities in the USA. I am very proud of them.
What are some of your mistakes that you will learn from in the second round of building your research team?
I made a lot of mistakes the first time, especially on the administrative level. I think I was often, and sometimes unnecessarily, arrogant and confrontational. In addition, I had the misfortune of being there during a pandemic when everything was subdued. I often pushed too hard and tried to get better conditions. Today I know that even if you’re right, you have to be more diplomatic.
Have you had to learn to deal with people who are not necessarily scientists but are in decision-making positions?
I have changed a lot in this respect over the last few years. Today, if I deal with directors, deans or heads of departments, I am very moderate. I know now that I can’t walk into a meeting wearing a sweatshirt, start acting like it’s an informal scientific meeting, and pretend to be the smartest person in the room. I’m going to put on a shirt and respect that these people know how their institutions operate on a day-to-day basis and I have to adapt to that. I may think they’re wrong, but I discuss things and look for compromises. And I try to move things forward.
You have 4 ERC grants. I don’t doubt that you have great scientific ideas, but do you think that your success is also due to the fact that you simply learned to write ERC grants well?
I think I’m very efficient in the way I write them, but anyone can be. An ERC grant application is a space where you can let your creativity run wild and describe a very complex and interesting problem and propose a solution to it, but you can afford to leave the ending open. Everything must be based on facts and strong arguments. I really like this system of ERC projects. I find writing them fulfilling and fun.
ERC grants are different from the similarly prestigious US NIH grants. My experience is that NIH grants are very dense and clearly written documents. It’s one sentence with many citations after another. And the experimental part of the project looks like a perfectly described spaghetti recipe. You describe every detail of what you’re going to do. ERC grant applications are very different in this respect.
What will you be doing in your latest ERC project?
Very briefly, we will be looking at techniques that allow deep brain structures to be stimulated from surface electrodes, which can contribute to the diagnosis and treatment of certain diseases such as epilepsy, tremor or cognitive impairment. Non-invasive stimulation of the vagus nerve from electrodes placed on the patient’s neck can help treat epilepsy or Crohn’s disease, while stimulation of the sublingual nerve can improve symptoms of sleep apnoea.
So you have a clear research direction for the next 5 years.
Anyone who gets an ERC project has to use the money to meet the objectives set out in the project. My goals seem meaningful to me now, but the path to them may be very varied. When I did my first ERC project, I was working on very different research at the end of it than at the beginning, because I realised halfway through that I hadn’t seen the translational potential of the technology towards patients at the beginning. We created a second independent line of research, explained everything in the project documentation and pursued a new direction because it seemed to me the most sensible use of the money. I will take the same approach now. If in a few years it turns out that what I wrote in the grant application when I submitted it doesn’t make sense in the context of current knowledge, I’ll change my research direction.
Author: Vědavýzkum.cz (TM)
Photo: ICRC
Article adapted for the ICRC website with permission of the author.
Adam Williamson
Adam Williamson is a new addition to the International Clinical Research Center (ICRC) of FNUSA and LF MU in the field of neuroscience. The Canadian, who studied theoretical electrical engineering in Texas, received his PhD from the University of Ilmenau in Germany. He has worked in Sweden at the prestigious Karolinska Institutet and other universities. His last workplace before coming to Brno was the Inserm Institute in France.
From an engineer he gradually became a neuroscientist with the ability to apply new technologies to clinical research. His research has received significant support from the European Research Council (ERC) under the EU Horizon Europe programme. He is the recipient of a total of four ERC grants (ERC Starting Grant in 2016, ERC Proof-of-Concept in 2020, ERC Proof-of-Concept in 2022 and ERC Consolidator in 2023). He is now transferring the latter two to the ICRC for implementation, the second of which is entitled Epilepsy Treatment Using Neuromodulation by Non-Invasive Temporal Interference Stimulation (EMUNITI). The grant promises five years of research support for a team called “Neuromodulation Technology” that Adam Williamson is building at the ICRC.
Celebrating a decade of Moravian collaboration in clinical studies
Representatives of Brno hospitals and IQVIA gathered on Wednesday, 19th April 2023, to celebrate 10 years of collaboration in innovative clinical studies. Members of the Moravian Prime Site, a unique space for collaboration in the design and implementation of clinical studies, highlighted the benefits of joint activities for research, patients, and the South Moravian Region. They have also encouraged the public to participate in clinical studies, e.g. through the new registry of volunteers.
Photo: Representatives of FNUSA and IQVIA
Five Moravian hospital and outpatient facilities constitute the Moravian Prime Site: St. Anne’s University Hospital in Brno (FNUSA), the Military Hospital Brno, the University Hospital Brno (FN Brno), the Masaryk Memorial Cancer Institute (MOÚ), and Medical Plus outpatient clinic in Uherské Hradiště.
“IQVIA is committed to the advancement of innovative research and development in the healthcare sector, and Moravian Prime Site is a key component of our strategy. By ensuring world class research, patients can have greater access to new therapies and transformed health outcomes in the future” says Dean Summerfield, Senior Vice President, Real World and Commercial Solutions EMEA, IQVIA.
The creation of the Prime Site followed the St Anne’s University Hospital in Brno’s (FNUSA) long-term activities in the field of clinical studies. One of the decisive factors was also the establishment of the International Clinical Research Center (ICRC) in 2011 and the related establishment of a centralized clinical studies department. The ICRC effectively connects research, academic, and applied spheres to bring modern practices from the microscope to physicians’ offices.
As the Director of FNUSA, Ing. Vlastimil Vajdák, stated: “The field of clinical and research studies is an opportunity to bring future treatment closer to patients. In addition to companies such as IQVIA, which bring studies to FNUSA, patients are our key partners, and we value their trust. I am glad that we have managed to connect with the expert teams of other Brno hospitals as well.” Collaboration between hospitals also enables the implementation of extensive studies that an individual subject would not be able to cover.
The Director of FN Brno, Ivo Rovný, MD, MBA, adds: “Clinical studies have become an integral part of patient care at individual FN Brno clinics and cover a wide range of diseases, especially in the fields of oncology and haematology, paediatric oncology, gynaecology, cardiology, neurology, and psychiatry. In some of these areas, FN Brno provides irreplaceable care within Brno and the South Moravian Region.” Thanks to its own Transfusion and Tissue Department, FN Brno can also fully participate in the implementation of studies that include medicinal products for modern therapies and can offer collaboration to other partners.
Moravian Prime Site is fulfilling other goals as well, such as supporting patient involvement in clinical trials. FNUSA has developed a registry for volunteers who want to participate in clinical trials and research. This gives the public the opportunity to contribute to research of treatments and diagnostic methods for future generations. Other partner institutions offer similar opportunities.
“The Masaryk Memorial Cancer Institute has had a more than twenty-year tradition of clinical trials, which are fully integrated into the institute’s operations and care for our patients and remain one of our development priorities. We greatly value the long-term and deepening cooperation with major partners such as IQVIA,” says MOÚ Director, Prof. Marek Svoboda, MD, PhD. “Not only do we expand the possibilities of oncological treatment for our patients, but the field of clinical research has an international reach for MOÚ. This year, we have gained the prestigious status of the European OECI Comprehensive Cancer Center. We are also a centre of the EUCRAN network for rare solid tumours,” he adds.
Photo: Moravian Prime Site 10th Anniversary
Moravian Prime Site members recognized the benefits of ten years of cooperation during the meeting, streamlining the entire process of managing clinical trials and, most importantly, enrolling over 2,100 patients in conducted clinical trials. The goal is to accelerate diagnostic processes, predict disease development, and evaluate the effectiveness of new treatment methods.
Author: Marta Vrlová, M.A., MPH, Senior PR Specialist ICRC, marta.vrlova@fnusa.cz.
Media contacts:
About partners:
International Clinical Research Center (ICRC) FNUSA and LF MU
We are a modern center of scientific excellence based in Brno, focused on preclinical and clinical research, primarily in the fields of cardiology, neurology, and oncology. We are looking for new diagnostic and therapeutic methods, technologies, and medicines. By implementing our findings into practice, we improve patient care and their quality of life. In July 2022, we became a joint workplace of the Faculty Hospital of St. Anne in Brno (FNUSA) and the Faculty of Medicine of Masaryk University (LF MU) in Brno. We are developing relationships and cooperation with other key players, both internationally and within our region. Our activities are included in the action plan for the implementation of the #brno2050 strategy. We are helping to shape the future of the #brnoregion.
The Clinical Trials Center (CCS) of ICRC has been the primary contact point for clinical evaluation within FNUSA since 2009. It provides all communication between the faculty hospital and the sponsors of clinical trials or the entities authorized by the sponsor. We are also the contact point for patients participating in specific studies and those interested in being included in the volunteer database. FNUSA currently has around 160 studies running, and CCS negotiates around 40-50 new studies per year. These are studies in almost all clinics, in the fields of cardiology, neurology, and internal medicine.
You can find more information about us at fnusa-icrc.org and fnusa.cz/klinicke-studie
Masaryk Memorial Cancer Institute – Department of Clinical Trials
Masaryk Memorial Cancer Institute in Brno is a top specialized cancer center with supra-regional coverage, a unique healthcare facility in the Czech Republic, and as of 2023, a European OECI Comprehensive Cancer Center. It houses all necessary medical fields to provide comprehensive cancer care, including prevention, epidemiology, diagnosis, individual modalities of anti-cancer therapy, rehabilitation, and public education. The institute focuses on scientific research, including basic research.
The tradition of conducting clinical studies at the Masaryk Memorial Cancer Institute dates back to the 1970s, when the institute was a significant research partner in the development of new cytostatic. In 2000, as the first of its kind in the Czech Republic, the Department of Clinical Studies (OKS) was established, providing complete organizational, administrative, and professional support for clinical studies at MOÚ. It prepares all contractual and academic clinical evaluations, and after their initiation, a team of experienced study coordinators, study nurses, and data managers coordinates and conducts study visits according to the protocol, participates in patient recruitment, and manages data and communication with the sponsor. The department also provides training for clinical study coordinators across the Czech Republic.
Currently, MOÚ initiates approximately 25 new phase I-III clinical trials for the treatment of solid tumours each year, involving around 300 patients annually. Since 2012, MOÚ has also had a clinical trial unit for phase I studies, and in 2022, it obtained the SÚKL certificate for conducting first-in-human clinical trials.
More information about us can be found at mou.cz and mou.cz/klinicke-studie/t1520, email studie@mou.cz.
University Hospital Brno – Unit of the Deputy Director for Science and Research
FN Brno is the second largest healthcare facility in the Czech Republic and a hospital of European importance, as evidenced, among other things, by its participation in six European Reference Networks (ERN). Since 2012, FN Brno has been registered in the Register of Research Organisations and since 2015 has been involved in the activities of the research infrastructure supporting academic clinical trials CZECRIN. It also cooperates with CEITEC and RECETOX in the field of applied and, to a lesser extent, basic research.
Science and research at the Brno University Hospital is related to its core business, i.e. healthcare, and thanks to this it takes advantage of the unique availability of patient data and clinical procedures that are essential for clinical research projects, including clinical trials. The Clinical Trials Department (OKS), which is part of the Unit of the Deputy Director for Science and Research, provides administrative and coordination support for the implementation of clinical trials at individual clinics of the Brno University Hospital. It participates in the preparation of contracts and, for ongoing clinical trials, the team of study coordinators of the OKS is involved in all phases of their implementation. More than 100 new applications for clinical trials, including academic trials, are processed annually at FN Brno. These are now also increasingly becoming part of grant and other research projects. Approximately 70 new clinical trials are initiated annually at FN Brno.
More information about us can be found at: www.fnbrno.cz and https://www.fnbrno.cz/utvar-namestka-pro-vedu-a-vyzkum/t4557
About IQVIA
IQVIA (NYSE:IQV) is a leading global provider of advanced analytics, technology solutions, and clinical research services to the life sciences industry. IQVIA creates intelligent connections across all aspects of healthcare through its analytics, transformative technology, big data resources and extensive domain expertise. IQVIA Connected Intelligence™ delivers powerful insights with speed and agility — enabling customers to accelerate the clinical development and commercialization of innovative medical treatments that improve healthcare outcomes for patients. With approximately 86,000 employees, IQVIA conducts operations in more than 100 countries.
IQVIA is a global leader in protecting individual patient privacy. The company uses a wide variety of privacy-enhancing technologies and safeguards to protect individual privacy while generating and analyzing information on a scale that helps healthcare stakeholders identify disease patterns and correlate with the precise treatment path and therapy needed for better outcomes. IQVIA’s insights and execution capabilities help biotech, medical device and pharmaceutical companies, medical researchers, government agencies, payers and other healthcare stakeholders tap into a deeper understanding of diseases, human behaviors and scientific advances, in an effort to advance their path toward cures.
To learn more, visit iqvia.com.
Challenging treatment leaves marks on the body
Since 2016, the Outpatient Clinic for Oncology Follow-up Care under the direction of Tomáš Kepák, M.D., Ph.D., has been operating in the premises of St. Anne’s University Hospital Brno (FNUSA). It offers care to patients who have undergone oncological treatment in childhood. It responds to the development of knowledge about the long-term effects of treatment on the later state of immunity, cell aging, or the premature development of chronic diseases. In line with the current European trends, the follow-up care services are now moving into the psychosocial field alongside purely medical care. Mgr. Lucie Štrublová is in charge of nutritional counselling. Being a childhood cancer survivor herself, she shared her experience and insights with us in an interview.
Photo: Lucie Štrublová
Please tell us your story.
Dr. Kepak calls me a woman of several roles (laughs). I was treated for a neuroendocrine tumour from the age of 10 to 15. My illness then led me to choose my profession. I graduated as a nutritionist at the Medical Faculty of Masaryk University (LF MU), where I am also currently finishing my PhD. In 2015, together with two other healed friends, I founded the association Společně k úsměvu, z.s. (Together to Smile). As a patient organization, we collect the experiences of other people affected by childhood treatment to form a rich nationwide network. We feel there is a need to share our experiences with each other in an effort to support children, teens, young adults and their families during and after the challenging cancer treatment. We seek to do this through a number of projects.
But my greatest achievement in life is my daughter Anita.
How long have you been working in the Outpatient Clinic for Oncology Follow-up Care at FNUSA?
I have been at the outpatient clinic since January 1, 2023 as a nutritional therapist, but we have been working together since 2018 when I came as a researcher as part of my dissertation. I study the role of adipokines as predictors for the development of cardiometabolic risk in young adults after childhood and adolescent cancer. Adipokines are proteins in our body that are produced by our adipose tissue cells and also influence various metabolic and hormonal functions in our body. With our research team, led by Professor Julia Dobrovolna from the Faculty of Medicine, we are trying to find out what the production of selected adipokines in adipose tissue looks like in patients just after treatment.
What specifically is your task in your new role as a nutritional therapist?
I provide targeted nutritional counselling for patients who have a referral from their physician. We discuss proper lifestyle choices together and I assess their nutritional status. Based on my findings, I then provide patients with individualized plan to establish appropriate eating habits.
What is the waiting time for your services?
So far 1-2 weeks.
What difficulties do patients most often come with?
The most common are overweight, obesity or lipid spectrum disorders, i.e. imbalances in blood lipid levels. These problems often go hand in hand with cancer treatment. Some diagnoses are at risk of developing overweight or obesity and associated cardiometabolic problems after treatment. Examples of these diagnoses include acute lymphoblastic leukaemia or brain tumours. The development of overweight and obesity in these diagnoses is influenced by the interplay of several factors, of which the treatment itself, such as cranial radiation or hormone therapy, is a very important factor. Frequent physical limitations, which can be seen especially in patients after brain tumours, or poor education of parents or patients themselves about nutrition after treatment, also play a role. When dealing with these difficulties, I always try to take an individual approach with each patient.
How can nutrition affect the course of treatment?
Nutrition is an important part of supportive care during the treatment itself. A patient’s body that is malnourished responds less well to the treatment administered, has a higher risk of developing certain complications, and if they have had surgery, their wounds are slower to heal.
How long do you care for a particular outpatient?
So far, I am starting my activity and I am scanning the needs of the patients. I see patients who need longer-term cooperation, but also patients who I see 2-3 times.
Is there a story that sticks in your mind?
Definitely yes. I have worked with a young woman during my research, who went through a challenging cancer treatment in her teens. She was then faced with a secondary tumour again as an adult. We first met when she was very overweight, and that was very distressing. She did not feel comfortable in her own body, which was uncomfortable. When you’ve had such a challenging treatment, it leaves marks on your body. And especially treatment in adolescence doesn’t really boost self-esteem.
That’s when we started working together to change. She was very motivated and interested in nutrition, and she started moving regularly, running, exercising. Gradually her weight started to change, the amount of body fat dropped rapidly, and she started to feel good. Last week she had a consultation with me. I saw a confident woman and sitting in front of me, who had lost 10 kilos and felt like herself again.
Does your work extend beyond the walls of the practice – for example, by creating recommended practices for professional societies?
That’s my goal for the future. However, I don’t yet have the data and practical experience to create any practices.
The trend in cancer care now is to cover needs comprehensively, in collaboration with downstream disciplines such as yours. Do you think we are succeeding?
We are definitely doing better than in previous years.
How important is it for patients to support people who have gone through the same fate?
That support is crucial. Knowing that there are people somewhere who have experienced the same thing as me and can live a good life, can give me a helping hand and understanding.
To share your experience, you founded the aforementioned association Společně k úsměvu, z.s. Could you give us more details of the individual projects you are dealing with?
Our aim is to support children who are currently undergoing treatment and to help those who have completed treatment and are struggling with some of the late effects of treatment, such as psychosocial difficulties, nutritional problems, dental problems or fertility disorders. It is through individual projects that the association provides this help. In particular, I would mention the Wise Guide project, which is set up as a mentoring programme. A team of our experts trains a cured patient to become a mentor, who then provides support to children and families in the Department of Paediatric Oncology at the University Hospital Brno.
We also have a Self-Help Group project, which is a support group for people who are struggling with some of the late effects after treatment. The group is coordinated directly by a psychotherapist. It meets once every 2 weeks.
But a big part of our work is the Astra project, which is dedicated to the late effects of treatment. We are responsible for raising awareness of the late effects of cancer treatment through webinars, workshops and the production of educational texts and publications on the subject.
Photo: Team Společně k úsměvu, z.s.
Besides nutrition, what topics do you think are important to communicate in relation to childhood cancer treatment – which the general society is not aware of?
There are a number of topics: discrimination in the labour market, life insurance or accessing a mortgage. The medical history that has been with the patient throughout his or her life plays a central role in these situations. Nowadays, in some European countries, the so-called ‘right to be forgotten’ has been approved for precisely these reasons. However, the return of patients to schools and communication with teachers and pupils in the classroom about the specific needs of these individuals is also problematic. This also includes depression, anxiety or fertility disorders.
How can clients seek your help?
In the Outpatient clinic, a physician refers patients for nutritional counselling. Within the association, you can reach us on our website or through social media.
Is there anything you would like to say to paediatric patients?
You are not alone!
And what would you say to the society in which the (cured) patients move?
The fact that at first glance you cannot see problems of a person after oncological treatment does not mean that he/she does not face them. There are many health problems and indispositions that are hidden and very difficult for us to communicate with someone who has not gone through the disease. Whether it’s chronic fatigue that prevents us from living life as we were used to before, even years after treatment, or whether it’s depression or anxiety that a large percentage of patients struggle with. Be considerate.
Thank you for the interview.
Author: Marta Vrlová, M.A., MPH, Senior PR Specialist ICRC, marta.vrlova@fnusa.cz.
Contact for media: Ing. Jiří Erlebach. Head of PR and Marketing, Spokesperson, FNUSA, +420 543 182 006. jiri.erlebach@fnusa.cz.
FAST heroes are coming to Czech schools. Together with children and their grandparents they will learn how to fight against stroke.
Schoolchildren in the Czech Republic have the opportunity to take part in the global experiential learning programme Heroes FAST, which aims to teach children to recognise the signs of stroke and to be able to call for help immediately. The project has been successfully implemented in 37 countries around the world.
Together we can save the world – one grandparent at a time.
Stroke or stroke or ictus is the second leading cause of death, the third leading cause of disability and one of the main reasons why children lose their grandparents. “The sad reality is that many stroke patients cannot be treated because they arrive at the hospital too late. People can survive and go on living without consequences if they receive prompt, quality and effective care. This is why it is important to spread awareness of the most common symptoms of this disease and to teach children that they need to call for help as soon as possible,” explains neurologist Hana Paloušková from Karviná Mining Hospital, who is one of the expert guarantors of the project.
According to a study by the World Stroke Organisation (WSO), every 30 minutes a stroke patient who could be saved dies or has permanent consequences. The study showed that up to 80% of stroke patients did not recognise their symptoms as stroke symptoms. These people did not think their condition was so serious that they needed to act quickly. The only way to know that someone is having a stroke is to be able to recognise the most common symptoms and, if they appear suddenly, to call an ambulance immediately.
The symptoms are summarised in the acronym FAST, which is easy to remember and stands for F for face, A for arm, S for speech, and T for time, which tells us not to wait and call an ambulance immediately, the patient is concerned about time.
“The content of the FAST Heroes educational program is based on animated characters. Its central figure, a boy we have given the Czech name Časomil (Timmy the Time), becomes a FAST hero after he learns how to defeat an evil blood clot and saves the lives of the great heroes, his grandparents. The other heroes of the FAST campaign are animated characters who also remind children of the most common symptoms of stroke: Tvářil Veselý (Franc the Face), Ručoun Silný (Armando the Arms), Mluvílika Zpěvavá (Sophia the Singer), and Táňa the Teacher, who guides the children through the lessons,” says project coordinator Renata Hejnová from the St. Anne’s University Hospital in Brno, whose role is to help schools implement the campaign in the classroom.
The fun five-week engaging and interactive educational programme is primarily aimed at children aged 5-9. It teaches children empathy and love, as well as providing them with practical, life-saving skills. The educational program can be implemented in the classroom or in a daycare setting. Children are equipped with tools to help them accomplish their mission, which is to educate grandparents. Educational materials include short animated films, classroom activities, and take-home materials that help children deliver the message literally to their homes.
The educational programme is open to the child, the whole class, the school or the teacher by logging on to the website, which is available in Czech at www.fastheroes.com.
One of the first representatives of the medical community to join the project is Svatopluk Ostrý, the head of the neurology department at the České Budějovice Hospital. I tried it with my children, who really enjoyed it. Even my colleagues’ children really like the programme. I am glad to be part of such an attractive project. I think the graphic design is a strong point of the project and the schools will like it.”
The first school that has joined the project and has already tried the educational programme in the classroom is the primary school on Tuháčkova Street in Brno. The school has previously been involved in the HOBIT educational programme, which is the older brother of the Heroes FAST project and also teaches pupils to recognise the signs of stroke and heart attack, and is aimed at second-grade pupils. “Based on our good experience with the HOBIT programme, we were happy to join a similar project aimed at our youngest pupils,” explains the school’s head teacher Jana Hanáková.
The Heroes of FAST campaign was developed by the Department of Educational and Social Policy of the University of Macedonia in Greece, together with the ANGELS Initiative supporting the improvement of care for stroke patients. The Heroes of FAST campaign is sponsored by the World Stroke Organization (WSO).
In the Czech Republic, the project is implemented by the Health Management Institute in collaboration with the Stroke team of the International Centre for Clinical Research, a joint facility of St. Anne’s University Hospital in Brno and Masaryk University Faculty of Medicine, the Hospital in České Budějovice, a.s. and Karviná Mining Hospital, a.s. with the support of the Cerebrovascular Section of the Czech Neurological Society of the Czech Medical Society of Jan Evangelista Purkyně.
“We hope that other hospitals and organisations will join the campaign and participate in the coordination of the whole mission,” says Veronika Svobodová on behalf of the Health Management Institute. “Creating a network of enthusiastic collaborating doctors, nurses and other professionals, as well as medical students or medical educators, is one of the building blocks for the successful implementation of the project and the spread of the Heroes of FAST campaign,” Svobodová adds.
We recommend following the website: www.fastheroes.com
ICRC welcomes the Portuguese Ambassador
On Tuesday 21 March 2023, H.E. Luís de Almeida Sampaio, Ambassador of Portugal to the Czech Republic, visited the premises of the International Clinical Research Center (ICRC). During his stay in Brno, he took the opportunity to learn about our research. The delegation was welcomed by Prof. Irena Rektorova, Head of the ICRC, and the team of the ICRC Center for Translational Medicine located in the Biology Park next to the Masaryk University campus. The meeting opened up possibilities for future cooperation.
Photo: Portuguese delegation with ICRC hosts
We discussed the development of possible collaboration between our centre and similar institutions in Portugal. Dr. Giancarlo Forte also showed the guests the research laboratories and samples of cardiac and tumour organoids, which are miniature and simplified organ structures that we use to understand the biology of the heart and cancer or to model diseases and then find appropriate treatments.
Photo: Demonstration of ICRC research
“I am pleased that the meeting highlighted common areas of interest for future cooperation,” said Prof. Rektorová. “We are sincerely touched by the sensitivity and interest the Portuguese Embassy showed towards our research. Portuguese scientists and students have historically been cornerstones of our research group in the ICRC,” added Dr. Forte.
The Ambassador also greeted his compatriots, Sofia Morazzo, Soraia Fernandes and Daniel Sousa, who are based at the ICRC, and learned about their research activities.
Photo: The joint meeting
“It was a pleasure to visit the ICRC in Brno and learn about its mandate and structure, as well as its most representative ongoing projects. Special mention should be made of the group of Portuguese researchers who are involved in cutting-edge projects for the ICRC, contributing to the visibility of Portugal in this prestigious institution and in Brno and the South Moravian Region. During my meetings, other avenues of cooperation were opened. Now it is time to implement the results of our constructive joint negotiations,” he concluded.
The delegation also included the Chancellor of the Portuguese Embassy in Prague José Luís Silva Riço, Director of the Portuguese Centre in Prague Gilda Machado, Assoc. prof. Iva Svobodová from the Department of Romance Languages and Literatures of the Faculty of Arts of MU and Barbora Břenková, assistant of the Portuguese Embassy in Prague. The guests went on to visit Masaryk University.
It has been an honour and we look forward to further meetings and cooperation.
Author: Marta Vrlová, M.A., MPH, Senior PR Specialist ICRC, marta.vrlova@fnusa.cz.
Contact for media: Ing. Jiří Erlebach. Head of PR and Marketing, Spokesperson, FNUSA, +420 543 182 006. jiri.erlebach@fnusa.cz.
The ICRC is a joint workplace of St. Anne’s University Hospital Brno and the Faculty of Medicine of Masaryk University.
Like a Michelin star: ERC grant holder Adam Williamson joins the ICRC
International Clinical Research Center (ICRC) saw a successful start of the year 2023 welcoming Dr. Adam Williamson aboard. A renowned neuroscientist, who just received a prestigious ERC Consolidator grant, opens a new Neuromodulation Technology research team in the ICRC. He will investigate methods of activating the central and peripheral nervous system to define promising treatment options for diseases such as bowel inflammation, epilepsy, and neurodegenerative disorders.
As Dr. Williamson explains: “I focus on non-invasive deep brain stimulation, primarily in epilepsy. We utilize electrodes placed on the skin which emanate electric fields. These electric fields combine in space, at deep brain regions, far below the skull and activate neurons to create desired brain reactions, for example the suppression of pathological epileptic activity in patients with epilepsy or the enhancement of memory retrieval in healthy participants during cognitive tasks.”
Adam Williamson (Photo by the ICRC)
A Canadian, who studied theoretical Electrical Engineering in Texas, received his PhD at the University of Ilmenau, Germany. He has worked in Sweden at the prestigious Karolinska Institutet and other universities. His last posting before coming to Brno was with Inserm in France. Starting as an engineer, he gradually became a neuroscientist with the ability to apply new technologies to clinical research.
His research has been widely supported by the European Research Council (ERC) grants under the EU’s Horizon Europe programme. He is a recipient of a total of four ERC Grants (ERC Starting Grant in 2016, ERC Proof-of-Concept in 2020, ERC Proof-of-Concept in 2022 and ERC Consolidator in 2023). The last two ERC grants are now being transferred to the ICRC for implementation, with the latter entitled “Epilepsy Treatment Using Neuromodulation by Non-Invasive Temporal Interference Stimulation” (EMUNITI). Among the considerable competition, he ranked alongside 321 researchers, who have won 2022 ERC Consolidator Grants, dividing the total €657 million. The grant promises a five-year long support of the research. Dr. Williamson is now creating his new team entitled “Neuromodulation Technology” for which he has started recruiting PhD students, postdocs, and technicians.
“I am delighted that we have been able to attract such an eminent foreign scientist to the ICRC. Having an ERC grant holder is both a privilege and commitment for us – to provide his team with a supportive environment. The prestige for our institution is comparable to Michelin star restaurants, with top level gastronomic experience and best chefs being equal to cutting-edge research and top scientists”, comments prof. Irena Rektorová, the Head of ICRC, on the recent successful partnership. Dr. Williamson follows: “I am very impressed with the staff and support at ICRC every day. Prof. Rektorová has created an atmosphere which is extremely effective and well-organized for top-level clinical research. I suspect to see many more ERC holders coming to Brno in the future.”
Shortly after his arrival, the new scientist has also been welcomed by the Mayor of the City of Brno, Mrs. Markéta Vaňková, at the yearly Meet the Mayor event for new foreign talents from local institutions and companies. He will conduct his research in collaboration with the research group of Assoc. professor Eric Glowacki at CEITEC VUT, researchers from the Neuroscience Program at CEITEC MU, and colleagues from the 1st Department of Neurology, the 2nd Department of Internal Medicine, and the 1st Department of Internal Cardio-angiology of St. Anne’s University Hospital Brno and the Faculty of Medicine of Masaryk University. For the moment, he is slowly settling in the city, discovering its beauties. “Tatarák is amazing!”, he concludes.
Meet the Mayor event, 3 February 2023 (Photo by the City of Brno Municipality)
Author: Marta Vrlová, M.A., MPH, Senior PR Specialist ICRC, marta.vrlova@fnusa.cz.
Contact for media: Ing. Jiří Erlebach. Head of PR and Marketing, Spokesperson, FNUSA, +420 543 182 006. jiri.erlebach@fnusa.cz.
The ERC and grant options
The European Research Council, set up by the European Union in 2007, is the European funding organisation for excellent research, funding creative researchers to run projects based across Europe. The ERC offers four core grant schemes: Starting Grants, Consolidator Grants, Advanced Grants and Synergy Grants. With its additional Proof of Concept Grant scheme, the ERC helps grantees to bridge the gap between their pioneering research and early phases of its commercialisation. The ERC is led by an independent governing body, the Scientific Council. Since 1 November 2021, Maria Leptin is the President of the ERC. The overall ERC budget from 2021 to 2027 is more than €16 billion, as part of the Horizon Europe programme, under the responsibility of the European Commissioner for Innovation, Research, Culture, Education and Youth, Mariya Gabriel. For more information follow https://erc.europa.eu.
International Clinical Research Center
We are a modern center of scientific excellence based in Brno, Czech Republic, oriented on preclinical and clinical research, mainly in the fields of cardiology, neurology and oncology. We search for new diagnostic and therapeutic methods, technologies and drugs. By putting our findings into practice, we improve patient care and quality of life. In July 2022, we became a joint workplace of St. Anne’s University Hospital Brno (FNUSA) and the Faculty of Medicine of Masaryk University (LF MU) in Brno. We develop relations and cooperation with other key players, both internationally and within our region. Our activities are included in the action plan for implementation of #brno2050 strategy, thus shaping the future of #brnoregion. Visit www.fnusa-icrc.org for more details about us.
The brain tissue growth and changes signal Alzheimer’s disease
A grape-like structure in the brain called the choroid plexus becomes enlarged and shows increased accumulation of abnormal inflammatory molecular signaling in people with Alzheimer’s disease, according to a new study. An international team of researchers, including scientists from the International Clinical Research Center (ICRC) in Brno, Czech Republic, show that these changes appear to be a more extreme or perturbed version of changes seen in the choroid plexus during normal aging.
The choroid plexus is a network of blood vessels and cells that produces cerebrospinal fluid (CSF) and creates a barrier between CSF and blood circulating throughout the body. Through the production of CSF, the choroid plexus helps maintain the brain’s immune system activation.
The choroid plexus increases in volume with age and Alzheimer’s disease. One striking finding from the study was that “the larger the choroid plexus, the poorer the cognitive performance in those Alzheimer’s patients,” said Gorazd B. Stokin, M.D., Ph.D., a leader of the Translational Neuroscience and Aging Program team at the ICRC and senior author of the study.
The scientists compared the CSF choroid plexus in healthy individuals and people with Alzheimer’s, as well as patients with other neurological diseases such as acute Lyme disease and amyotrophic lateral sclerosis or ALS. They analyzed inflammatory signaling in the CSF, as well as structure and volume changes in the choroid plexus in postmortem brains and in patients using MRI.
Following up on studies that show the choroid plexus can be damaged in aging and Alzheimer’s, Dr. Stokin and his colleagues wanted to focus more deeply on the role that this tissue may play in neuroinflammation in the disease. The researchers found protein abnormalities and “an aberrant signaling of immune molecules in the CSF and choroid plexus of people with Alzheimer’s,” said study author Patrick Pirrotte, Ph.D., Director of TGen’s Collaborative Center for Translational Mass Spectrometry in Phoenix, Arizona (US).
While these biological changes are also found in normal aging, they are different from those seen in other neurological disorders examined in the study. The changes seen in aging and Alzheimer’s patients were most pronounced in the 66-75 years old age group, the researchers found.
“The changes in choroid plexus volume in this group could be related to the recruitment of more inflammatory cells,” said Mária Čarná, Ph.D., of ICRC and the papers first author. “With the help of cognitive performance tests taken by some patients, the team also showed that increased choroid plexus volume was correlated with poorer cognitive performance.”
The scientific team has now published its findings in the prestigious journal Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association. The researchers cautioned that more work needs to be done to determine whether these changes in the choroid plexus and CSF are causing Alzheimer’s, or whether they reflect the disease state.
You can access the article at:
ICRC is a joint workplace of St. Anne’s University Hospital Brno and the Faculty of Medicine of Masaryk University in Brno, Czech Republic.
Research funding for the study comes from the European Regional Development Funds (No. CZ.02.1.01/0.0/0.0/16_019/0000868 ENOCH grant); the European Union’s Horizon 2020 research and innovation programme under grant agreement (No. 857560) and CETOCOEN EXCELLENCE Teaming grant (No. CZ.02.1.01/0.0/0.0/17_043/0009632); Cetocoen Plus (CZ.02.1.01/0.0/0.0/15_003/0000469); the Czech Ministry of Health grants (NV 18-04-00346, NV 18-04-00455 and 00064203, NV19-08-00472); INBIO grant (No. CZ.02.1.01/0.0/0.0/16_026/0008451); NIH grant (P30 AGO6242); the Barrow Neurological Foundation and the Fein Foundation; the research infrastructure RECETOX grant (LM2018121); the Grant Agency of the Masaryk University (No. MUNI/G/1131/2017 GAMU grant); the National Cancer Institute of the NIH grant (No. P30CA033572); the NIA U01 grant (U01AG061357); the Next Generation EU (LX22NPO5107(MEYS)); and the Institutional Support of Excellence 2. LF UK grant (6980382).
Author: Marta Vrlová, M.A., MPH, Senior PR Specialist ICRC, marta.vrlova@fnusa.cz.
Contact for media: Ing. Jiří Erlebach. Head of PR and Marketing, Spokesperson, FNUSA, +420 543 182 006. jiri.erlebach@fnusa.cz.
Intensive Care Medicine Festival honours ICRC research
At the end of January 2023, the 25th edition of the international conference Colours of Sepsis dedicated to sepsis and intensive medicine in adults and children took place in Ostrava. Among the international guests were, for example, Prof. Dr. Manu Malbrain from Belgium with his presentation “Why we need more awareness for early sepsis detection” and Prof. Marcin Osuchowski from the Ludwig Boltzmann Institute of Experimental and Clinical Traumatology in Vienna on the topic “Treatment of Sepsis by Phenotyping: a practical tool or wishful thinking?”.
Photo: Dr. Hortová-Kohoutková during her poster presentation
The International Clinical Research Center (ICRC) of FNUSA and LF MU was successfully represented at this conference by Dr. Marcela Hortová-Kohoutková from the research team Cellular and Molecular Immunoregulation led by Mgr. Jan Frič, Ph.D (CMI). She presented a poster on the topic “Functional changes of monocytes and neutrophils as early markers of septic shock severity”, which won the main poster section of Colours of Sepsis. “Our projects have long focused on the study of sepsis and septic shock, where the immune system plays a crucial role in their development and subsequent course. We are looking at functional changes in cells of innate immunity, especially monocytes and neutrophils. We have been able to show that patients with a poor prognosis have strongly altered functions of innate immunity. We are able to detect these changes already at the time of admission to the intensive care unit. Early analysis could help in the future to select patients who do not respond to conventional treatment and are therefore candidates for personalized treatment,” says Dr. Hortová-Kohoutková.
Diploma for 1st place in the Colours of Sepsis poster session
Along with the CMI team, other partners were involved in the project, namely the Intensive Care ICRC research team of Assoc. Prof. Dr. Pavel Suk, Ph.D. and colleagues from the Anaesthesiology and Resuscitation Clinic of the FNUSA. This confirms the excellent connection between the clinical and research part of the St. Anne’s University Hospital in Brno.
Author: Marcela Hortová-Kohoutková, Ph.D., Senior Postdoctoral Researcher, Cellular and Molecular Immunoregulation ICRC
Through the eyes of a psychologist: What is life like for people who have undergone cancer treatment in their childhood?
February 15th is the annual International Childhood Cancer Day. This year, at the International Clinical Research Center (ICRC), we want to highlight the needs of cured paediatric patients who are dealing with the consequences of their treatment in adulthood.
Since 2016, the Outpatient Clinic for Oncology Follow-up Care under the direction of Tomáš Kepák, M.D., Ph.D., has been operating in the premises of St. Anne’s University Hospital Brno (FNUSA). It offers care to patients who have undergone oncological treatment in childhood. It responds to the development of knowledge about the long-term effects of treatment on the later state of immunity, cell aging, or the premature development of chronic diseases. In line with the current European trends, the follow-up care services are now moving into the psychosocial field alongside purely medical care. In particular, our clinic has expanded its services to include psychological care and nutritional counselling. In this way, we also support patients in taking responsibility for their own health care in a broader sense.
What problems do patients face? How do they feel in relation to the general population? And what are their specific needs? One of the new team members, psychologist Jakub Kozák, offered us his insights.
Photo: Mgr. Jakub Kozák
How did you come to work at the Outpatient Clinic for Oncology Follow-up Care at FNUSA?
Dr. Kepák invited me to join the outpatient clinic as a member of the future psychosocial team, in order to map the needs of patients from a different perspective than has been customary so far. The current European trend is similar. Dr. Kepák and I know each other from the Department of Paediatric Oncology at the University Hospital Brno. I have long been involved in the field of child psychology and psychopathology. We felt that cooperation could be beneficial, even though the practice primarily focuses on adults, because many topics overlap with our category of patients.
What is your role within the clinic?
I offer screening for mental health needs to patients. If I spot a problem that falls within my area of expertise, I try to treat it in some way. Acute conditions can be dealt with on a short-term basis. However, because we do not yet have the capacity for long-term care, we then try to transfer patients to regional specialists as close to where they live as possible. Clients come to us from a wide area of Moravia, sometimes even from Bohemia. Our aim is to create a network of collaborative centres with colleagues from other outpatient clinics to provide the support patients need.
So, at this point, are you able to offer patients the specific names of local colleagues to take over their care?
In some places, yes, in others we’re still making contacts. Networking is a longer-term process. There are also areas where psychological care is generally scarce, but we are trying to work with that.
Do you offer services to all patients of the clinic, or does it depend on referrals from doctors?
I try to reach out to everyone. If I am unable to meet someone directly in the outpatient clinic, for example because of the schedule of examinations that patients undergo with us, my colleagues mention the possibility of a psychological consultation.
What age group do you work with?
I meet with the whole spectrum of people. We have young adult patients, five years out of treatment, but also older patients, in their forties and fifties.
What difficulties do patients most often come in with?
With younger patients, around the age of 25, we often deal with their entry into adulthood, the possibility of becoming independent and setting rules towards their parents (family). A parent whose child has been in direct danger to life may subsequently be hyperprotective, that is, trying to protect their child too hard. This is a natural consequence of the treatment; however, it is important for the young adult to realise independence in life as far as possible, not to be bound by the anxious care of the parent or their efforts to control potential risks.
Another set of difficulties are concerns about the future, issues of family planning, often reproductive health and the very possibility of having children at all. There is also the fear of recurrence of the disease and the concern about the illness of one’s own child. There are often anxieties that may already stem from the personality make-up of a particular individual, and these can be greatly exacerbated by treatment.
Do you ever encounter the opposite spectrum of experiences, e.g. positive patients who are able to take life in their stride because of their distressing experience?
I’m glad you mention that. In our work, we always hope that even when a child is hit by such a powerful experience, it may not always lead to permanent major limitations and distress, but it can move him/her on. When a patient like that comes along, it’s always a wonderful encounter. Dr. Kepak often calls our practice a “clinic of joy” when we see many patients, who have gone through challenging treatment, reach important life milestones, even though they may have doubted it during treatment. There are also those who completely reassess their value ranking. This is especially true for those who are affected by treatment during adolescence. They think a lot about their situation, and I dare to say they often come out enriched.
Is it possible to distinguish traumas and experiences related to treatment from others? Or is that not even desirable and you approach your patients’ problems holistically?
We cannot always be sure that a certain problem is primarily related to the treatment, but we try to make that distinction. We do, however, take it as a kind of extra for patients with this difficult experience, that they have the opportunity to address their issues, if they wish to do so. This relates both to memories and to their own overall perception of their quality of life in the current period. Our limit for now is our capacity. So, we need to consider the extent to which we will develop support within our outpatient clinic and when we will engage with a network of other professionals.
Do you also work with patients’ families?
Adults are in varying degrees of autonomy in the context of their relationship with their parents. Our patients have at some point used parental support quite extensively on various levels and there comes a time when it would be desirable to gradually loosen this bond. Sometimes it is successful, the parent keeps his distance and gives the child the space to find the optimal degree of autonomy naturally. Other times it is less successful, and so we try to work with that. We also have a group of patients who have more significant health limitations due to treatment, such as cognitive or motor impairment. Some parents sacrifice so much that they permanently subordinate their lives to the child’s needs, they are available to the child, they care for the child nonstop. We then address the model of how patients could exist without the majority presence of the parent, and thus have the possibility of realization without parental support.
What about partner relationships?
We are addressing that just occasionally, for the moment. There are questions about the extent to which the partner needs to be informed about the patient’s past. I remember a case where this information did not come up at all and we discussed to what extent the patient wants to inform the other person about the treatment at that stage of the relationship, what his/her concerns are and how this topic can be opened in partner communication.
What kind of mental hygiene do you recommend to your clients?
All of us, regardless of the presence of serious illness or treatment, benefit from taking care of our own resources. Thus, I find it important to think of my own body and mind in self-care, while doing at least a little something every day to feel good. It doesn’t take a lot of time or energy, just that focus and setting aside the essential minimum is very important. Part of it is prevention, striving for a healthy lifestyle. In addition, with our patients, my goal is always to pinpoint an area where they can experience usefulness, so that they can live well and see their own value even with a possible handicap.
You mentioned the European trend towards comprehensive care for cancer patients and survivors. It reminds me of Prof. Koutecký, the founder of paediatric oncology in the Czech Republic, talking about the need to see patients in their whole context, including psychological support. Do you think we are succeeding?
I have a lot of inspiration in palliative care, where this trend of a holistic approach is very strong. I now see a similar direction in our efforts in the clinic. We have to try to do this, even if it sometimes means facing various attitudes of other professions towards psychological work, perhaps some prejudices. Part of this is due to the less tangible way we work. And I hope that we are succeeding – this must be decided by patients and colleagues from other disciplines. In our clinic we are certainly making efforts to achieve it.
Are you the only clinic in the Czech Republic with similar services?
There is another center at the Motol University Hospital in Prague, with which we cooperate. We are currently going there for an internship to harmonise care concepts and to discuss foreign trends.
Does your work have an outreach to the public or do you develop recommendations for professional societies?
We are just starting with outreach. For example, we are in contact with patient organisations. I also see the importance of education in schools. We know of patients who have had a very difficult return to school. There is a need for an appropriate educational approach to the specific needs of the child in/after cancer treatment, but also a need to work with the class and integrate the individual who has gone through a challenging experience – often threatening their own life and its long-term quality.
What topics do you think are taboo in society today in relation to childhood cancer treatment?
I see a certain degree of disadvantage for the group of cured patients. We are trying to work towards equal opportunities for them. Many cured patients are actually healthy after cancer treatment, yet they struggle with discrimination. This concerns, for example, the possibility of arranging a mortgage, insurance, employment opportunities. These people want to live a full life and have a perspective.
Is there a story that sticks in your mind?
I can think of one outpatient who was significantly affected in his own self-sufficiency by treatment. We are now working on getting parents to allow themselves to seek appropriate help. We are addressing how much further care they will provide and to what extent they will use social services support. The reason this particular case comes to mind is the poignancy with which parents have to process major losses in their lives. One minute they are raising a child they believe will take care of itself in adulthood. Then a moment comes that somehow takes away that relative security and they have to reorient their approach. They are also faced with the fact that the social system cannot offer them enough support. We want to seek the highest possible level of life fulfilment for these patients, for the families. I think that as a society we should do more about this.
The stories you encounter must often be challenging. How do you maintain your own mental health?
I have a certain habit of working with stories that I keep within professional boundaries. But I also want to mention my family, who are a great support for me. I consider it a great gift, I would say a “life bonus”, that my wife and children carry with me this very service to people with difficult life stories. It certainly changes not only my outlook on life and the world, my whole family shares it with me. At the same time, I couldn’t do without my personal resources, which for me are music, the creative process in general, and sports.
How can clients find your help? If we wanted to conclude by offering a helping hand to those who are hesitant or unfamiliar with aftercare options?
We are working on better communication of our services externally. As part of the process of completing treatment, patients are given information about where they can access follow-up care. We also have our own space on the FNUSA website and work with patient associations. If patients feel the need and are not yet in the follow-up system, I can definitely recommend it. In hyperbole, we compare it to technical inspection of a car – we offer a check of overall health, including my screening of mental fitness. We will certainly be happy if patients take advantage of this.
Thank you for the interview.
For more information and contacts for making an appointment at the Outpatient Clinic for Oncology Follow-up Care at FNUSA, please visit: https://www.fnusa.cz/pro-pacienty-a-navstevy/pracoviste/dispenzarni-onkologicka-ambulance/ (CZ only)
The clinis’s activities were part of the European PanCareLIFE project, which set out to improve the quality of life of children and young patients cured of cancer throughout their lives. This is now being continued by the follow-up project PanCareFollowUp, supported by the Horizon 2020 programme of the European Union (grant no. 824982).