An exercise intervention for children and adolescents undergoing anti-cancer treatment
What is FORTEe?
FORTEe is an international research project that brings together 16 institutions from eight European countries. It is one of the world’s largest studies in paediatric exercise oncology, receiving funding from the European Union’s Horizon 2020 Research and Innovation Grant. The study aims to investigate the effects of an individualised exercise programme and adapted digital +health technologies in children and young people who are undergoing intensive cancer treatment.
What is the mission of FORTEe?
Maybe you experienced yourself that while going through cancer treatment, a vicious cycle of physical inactivity makes you feel weak and you don’t move around much. Sometimes this happens because of the treatment, the illness itself, or just dealing with all the emotions. In adult cancer patients, it was shown that physical activity and specific exercise training can really help, making them feel less tired, improving their quality of life, and even reducing pain or other complications during treatment.
But what about childhood cancer patients and adolescents?
Until now, precision exercise training has not been part of standard care in paediatric oncology and does therefore not reach most young patients. FORTEe is here to change that!
The big goal of FORTEe is to gather solid evidence that personalized exercise can make a real difference in the care and well-being of children and adolescents with cancer. The FORTEe partners have teamed up to run a special clinical trial focused on childhood cancer patients, aged 4 to 21, who are undergoing anti-cancer treatment.
Why do we do this?
We believe that every young cancer fighter deserves the best care possible. We hope that with the results from our FORTEe clinical trial, we can pave the way for customized exercise training to become a standard part of the care that children, adolescents and young adults (CAYA) with cancer receive all across Europe. This means in the future, more young patients could get access to a specific exercise plan to help them feel better during cancer treatment.
Together we #GetStrongToFightChildhoodCancer!
Are you interested to know more about the FORTEe project and the clinical trial?
The FORTEe project aims to demonstrate that precision-based exercise training during cancer treatment in CAYAs is a safe and potentially effective therapy to counteract fatigue, maintain strength, coordination, and overall improve quality of life. For the exercise training, no specific facility is needed, many exercise routines can be done in the patient’s room! Carefully crafted by the FORTEe consortium, these illustrations are part of training and testing guides, assisting young cancer fighters and their physicians and physiotherapists through exercise routines, specifically tailored for each patient’s journey.
All rights reserved; reproduction or use of the illustrations requires prior permission from the copyright owner, F. Lanfranconi et al.
Youth Cancer Europe is excited to announce that our “Recommendations for Equitable, Diverse and Inclusive Cancer Care in Europe” Policy Paper will be launched in the European Parliament in Brussels!
The event will bring together Members of the European Parliament, health organisations, patient advocacy groups, and other stakeholders, and will invite young people living with and beyond cancer to share their experiences, their research findings and policy recommendations. Discussions will have a strong focus on the needs of minorities and the especially vulnerable groups and disenfranchised communities like Roma, LGBTQ, immigrant, and other underserved populations.
The “Recommendations for Equitable, Diverse and Inclusive Cancer Care in Europe” collaborative document was developed with patients in the driving seat and benefited from large stakeholder input within the EU co-fundedEU-CAYAS-NET project to deliver onEurope’s Beating Cancer Plan, resulting in recommendations that are designed to be aspirational, actionable, and most importantly, achievable.
The event, organised byYouth Cancer Europe, is set to take place on Tuesday, March 21, from 11-13 CET, in Room ANTALL 6Q1, and will be hosted by MEP Stelios Kympouropoulos.
Seats are limited, please registerheretoday so we can save a spot for you!
Today, after 20 months since the conflict began, Youth Cancer Europe is still standing with unwavering determination to assist Ukrainian cancer patients in the midst of the ongoing war.
Throughout this challenging period, our mission remains unchanged: to ensure that Ukrainian people living with and beyond cancer have access to the essential treatment and cancer care they require.
Our Ongoing Efforts
Right from the beginning, YCE members, staff and volunteers jumped into action and organized a coordinated response and operational support for cancer patients in the country. On February 26th, just two days after the conflict began, we launched our crisis response.
Our primary focus has been on gathering information and facilitating communication with Ukrainian cancer patients. We’ve worked tirelessly to ensure that they are aware of the free medical services and specific cancer medicines and/or therapies for Ukrainian refugees in different European countries. Moreover, we’ve provided guidance on EU legislation, country-specific regulations, and legal provisions. We’ve gone the extra mile to assist patients with registration processes,in order to access health services.
Our Strong Ties with the Ukrainian Community
Throughout these challenging times, we’ve stayed as close as possible to our dearest members from Ukraine. We hosted a special “War and Cancer” online webinar. It was a powerful moment where we connected with our Ukrainian people, listened to their inspiring stories of resilience, courage and strength, as they shared their experiences of traveling across borders for cancer treatment in various parts of Europe.
Earlier this year, we had the pleasure of having Nicoleta Pauliuc, Romanian Senator and a dedicated member of the National & European Parliamentarians for Cancer Action attending one of our special events dedicated to Ukrainian refugeeswho are cancer patients and benefitted from YCE’s evacuation and operational support, currently accessing cancer therapy in România.
Teamwork Makes the Dream Work!
All this time, UICC – Union for International Cancer Control was our constant ally in this fight so we wish to express our heartfelt appreciation. With their continuous support, we’ve reached countless cancer patients and their families, helping them find safety in neighboring nations and secure the life-saving treatment they urgently require. YCE has also worked closely with The Little People Romania, a cancer charity, who have played an important role in coordinating the efforts for Ukrainian cancer patients.
YCE’s Ongoing Mission
The fight continues, but so does our commitment. As long as the war continues and patients need our help, Youth Cancer Europe will remain dedicated to:
Guiding and Connecting: We’ll be here to guide patients and connect them with the right clinics and healthcare professionals who can provide the care they require.
Connecting to Local Support: We’ll continue to connect patients to local NGOs and aid organizations, ensuring they receive the support and resources they need.
Offering aid in the translation of medical and legal documents
Supporting patients and their families to get safe and appropriate housing, food, and social care
Provide Mental Health support through peer support
You can count on us to keep you updated with the latest news and our exciting progress. Just make sure you keep an eye on our social media channels.
2023 Summer was a busy one for our team. Leading the work on Adolescent and Young Adult Cancer (AYA) Care in the EU-cofunded European Network of Youth Cancer Survivors project “EU-CAYAS-NET” we were on the move constantly.
We organised Peer Visits in three awesome European countries – Italy, Belgium, and the Netherlands. We visited a total of 5 hospitals, participated in many educational stakeholder meetings, and worked alongside an incredible team of 30 participants, eager to make a difference.
Now, you might be wondering: What’s all the fuss about? What exactly are these Peer Visits?
Let’s dive into it!
Peer Visits: An In-Depth Look
The concept of Peer Visits is rooted in observational research. It allowed our participants to step into the shoes of local service users (patients) and healthcare professionals, and observe their natural work environment, gaining valuable insights through three types of observations:
Naturalistic Observation: Participants observed the environment where patients receive care and healthcare professionals are working. Participatory Observation: They conducted interviews, took notes, and captured photographs during the guided tour of the hospitals Structured Observation: They filled in a carefully designed Peer Observation Form, focusing on specific aspects of AYA care.
This form of peer learning is designed to stimulate interaction, collaborative learning and solution-building. Our goal is to contribute to a “Specialist AYA Units Minimum Standards”position paper, which will be developed based on peer study reports resulting from Peer Visits to AYA oncology departments in Italy, Belgium and the Netherlands. We were also able to provide the collaborating institutions with valuable feedback, along with practical takeaways that our participants can use to support health-policy initiatives in their own countries.
Gelato, tulips and Belgian waffles
Our journey began in Milan, Italy, where we were warmly welcomed by Dr. Andrea Ferrari and the fantastic team at Fondazione IRCCS Istituto Nazionale dei Tumori. We had a deep dive into the world of AYA care, youth projects, and support programs for young cancer fighters in Italy.
But the real magic happened when we met some remarkable Italian AYA patients – Giorgia, Adelina, Edoardo, Andrea, Giorgia B, Teresa, and Marta. Their stories touched our hearts, and we had some truly heartwarming and lovely conversations with them.
We also had a chance to catch up with our FORTEe project partners, William Guglielmo Zardo and Marco Chisari, and discuss the exciting plans we have in store for the future.
Our next stop was in Ghent, Belgium. We had a strong start with engaging discussions at the Ghent University Hospital, led by the local AYA host team: Johan De Munter, Nathalie Belpame, Veerle Sey, and Karsten Vanden Wyngaert. We talked about healthcare, insurance, training for medical staff, and learned a lot about how they support young people with cancer. We are so grateful to all the AYA care experts who participated in our focus groups.
We discussed topics like helping minorities and long-term support for young people even after they finish their treatment.We also had stakeholder group meetings with Stichting tegen Kanker & Kom op tegen Kanker NGOs and had the privilege to visit several charitable funded initiatives on the hospital grounds. Another highlight of our trip in Belgium was our visit to Het Majin Huis in Ghent, an open support house, which left us feeling truly inspired.
During our session with Chloe De Roo from the Fertility service we talked about personalised preservation choices for young people. It was eye-opening to discover that professionals undergo specialised training to better assist AYAs.
Plus, no visit to Belgium would be complete without indulging in their famous waffles during the evening!
Each visit provided invaluable insights into how these institutions operate and cater to the needs of AYA patients. We are incredibly grateful to Prof. Dr. Winnette van der Graaf, Dr. Eveliene Manten-Horst, Dr. Olga Husson, and their amazing team! Our discussions with them were not only super fruitful and insightful but also made our entire experience just amazing! We were thrilled to explore the Activity Centre and the Quality of Life Department. Plus, getting to catch up with our friends from the STRONG-AYA project and having more conversations was a great bonus.
Incredible guided tours led by local AYAs themselves, engaging group discussions, enriching learning moments, and meeting wonderful people – what more could we have hoped for? It was truly an unforgettable experience! Plus, we are proud to say that, by the end of our stay, we fully embraced the Dutch experience navigating public transport and coping with the moody weather !
A summer to remember
We are immensely grateful to all the healthcare professionals, institutions, and individuals who made this adventure possible. Your contributions will undoubtedly shape our ongoing efforts to support young individuals facing the challenges of cancer. We’re excited to bring back the knowledge and experiences gained during these Peer Visits to further our efforts in supporting young individuals battling cancer.
On 22-24 March 2023, Youth Cancer Europe participated in the annual FORTEe General Assembly Meeting, which took place in Madrid, Spain.
Katie Rizvi and Hernâni Zão Oliveira represented Youth Cancer Europe and met up with over 40 delegates from the FORTEe consortium to discuss the progress of the project that focuses on physical exercise for children and adolescents with cancer by using innovative digital technology such as augmented reality to make exercise training more effective, age-adapted, and personalized.
“One of the complex problems of prolonged hospitalization of children with cancer is the loss of muscle mass, and the consequent lower response of the body to cancer therapies. We’re excited to be part of the FORTEe consortium, representing Youth Cancer Europe in this EU-funded research project, also developing and testing serious games on mobile apps and AR, focusing on exercise therapy and sport science” said Katie and Hernâni.
The main objectives of FORTEe include promoting exercise therapy to make young patients stronger for fighting childhood cancer, stimulating translational research, creating substantial evidence for an innovative, patient-centered exercise treatment, and implementing pediatric exercise oncology as an evidence-based standard in clinical care for all childhood cancer patients across the EU and beyond.
The project is coordinated by University Medicine of the Johannes Gutenberg University Mainz and will be implemented by 16 partner institutions from 8 European countries.
Or, get in touch with the coordinators of the project by contacting info@fortee-project.eu Read more about YCE’s participation in other EU-funded projects here
Earlier this month YCE patient advocates Nicola Unterecker and Mariana Coutinho have been invited to take part in a youth policy dialogue towards a comprehensive approach to mental health with Commissioner Stella Kyriakides, in Brussels.
Nicki and Mariana shared their personal stories and highlight the struggles faced by young people living with and beyond cancer, talking about loneliness, isolation, health anxiety, concerns about returning to work, changes to family dynamics, and more, all the while emphasizing the need for free and specialized mental health services for all young adults with cancer, before and after treatment.
Speaking at the event, Mariana shared her last year’s personal experience of loneliness and isolation during cancer treatment, pointing out the absurdity of patients having to pay for mental health services that should be free.
“I tried to seek the help of a psycho-oncologist in a public hospital, but I would have needed to wait for several months, so I ended up paying out of pocket for private appointments”, stated Mariana.
She called on the European Commission “to improve access to mental health services, through funds allocations and more innovative services” that would enable cancer patients and survivors across the EU to receive appropriate and free mental health care.
From left to right in the picture, Nicola Unterecker and Mariana Coutinho.
“The fear of reoccurrence, depression, PTSD, isolation, body image issues due to changes caused by medications, loss and grief are daily struggles for many cancer fighters and survivors, including me. There are so many burdens on us already. Finding mental health support and being able to afford it should not be an additional one” said Nicola in her powerful intervention.
Nicola Unterecker and EU Health Commissioner Stella Kyriakides
Ana Amăriuței, patient advocate at Youth Cancer Europe and Biomedical Science PhD student at University of Sheffield, originally from Romania, shared her own story of childhood cancer in a high-level event hosted by European Commission’s Stella Kyriakides and Acko Ankarberg Johansson, Swedish Minister of Health Care.
(Stockholm, Sweden) 1st of February 2023 – In the run up to World Cancer Day 2023 the European Commission and the Swedish Presidency of the Council of the European Union co-organised a high-level conference on cancer. The conference took place under the title “Equity, excellence, and innovation – modern cancer care for all, Europe’s Beating Cancer Plan – eradicating inequalities within cancer care”
Following keynote speeches from Acko Ankarberg Johansson, Swedish Minister of Health Care, EU Commissioner Stella Kyriakides, Dr. Hans Kluge, WHO Regional Director Europe, Dr. Douglas R Lowy, Principal Deputy Director, National Cancer Institute and Spanish Minister of Health, Carolina Darias San Sebastián, Ana Amăriuței delivered a powerful and emotional speech, addressing topics such as Equity, Diversity, and Inclusion and spoke about EUCAYASNET, the first-time-ever EU funded project, coordinated and managed by young people with lived experience of cancer.
Ana called on the Swedish Presidency of the Council of the European Union and the European Commission “to provide a sense of unity and security by ensuring appropriate access to medical care to every single cancer patient in Europe regardless of their gender, race, socioeconomic status, sexual orientation, place of birth and residency, religious or spiritual beliefs” as all stakeholders work towards eradicating inequalities in cancer care.
Speaking at the event, Ana said: “We owe these changes to our loved ones and the cancer patients who are no longer with us and for whom we were too late to make a transformation, but most of all, to all those 2.7 million Europeans who are diagnosed each year with cancer”.
In addition to presenting the latest deliverables under the EU Cancer Plan, participants at the conference discussed three main topics: prevention, early detection, and the conditions for data-driven cancer care.
From left to right in the picture: Stella Kyriakides EU Health Commissioner, Ana Amăriuței, Biomedical research PhD student and YCE patient advocate, Mia Rajalin, Vision Zero Cancer and Lung Cancer Association, Acko Ankarberg Johansson, Swedish Minister for Health Care and Carolina Darias San Sebastián, Spanish Minister of Health.
Youth Cancer Europe will speak at the Economist’s 8th Annual World Cancer Series Europe, to be held in Brussels on 8-9th November 2022. More than 90 speakers will explore best-practice solutions to improving care and patient outcomes, aligned with the EU Beating Cancer Plan, identifying strategies to reduce inequities and encourage innovation through treatment and technology.
YCE’s Katie Rizvi will be joining the 8th November 10:25 am -11:05 am CET Panel “The future of European cancer control in a time of crisis”,speaking about our response to queries and requests of Ukrainian patients needing continued cancer therapy outside of the war-torn country. Please see the detailed Agenda here.
YCE members can register to attend free via the link below
With studies suggesting that between 40% and 80% of adult female cancer patients are at risk of becoming infertile and between 30% of male cancer patients may become sterile after treatment for cancer, increased survivorship means that the preservation of fertility is becoming an increasingly important topic for patients [Knapp, Caprice A., Gwendolyn P. Quinn, and Devin Murphy. “Assessing the reproductive concerns of children and adolescents with cancer: challenges and potential solutions.]. It’s also been suggested that fertility impairment might be considered one of the most life-altering late effects of cancer treatment, affecting the survivors’ body image, sexuality, dating relationships, marriage patterns and sense of wellbeing [Levine, Jennifer M., et al. “Fertility and Sexuality.” Paediatric Psycho-Oncology: A Quick Reference on the Psychosocial Dimensions of Cancer Symptom Management (2015).].
However, despite Europe’s ageing population and an increasing consideration for European citizens’ right to build a family, awareness of this issue remains low and discussions linking fertility and cancer are not highly placed on the European Union’s political agenda. Considering the growing momentum in the field of cancer, we wonder why Europe’s Beating Cancer Plan does not reference fertility issues even once.
Following the objectives set out in our White Paper published in 2018, Youth Cancer Europe’s advocacy project focuses on building support & impacting policies through a EU Presidency contact programme, including meetings with the Permanent Representations and specific Members of the European Parliament as well as monitoring on-going legislative files and Council Conclusions/Parliamentary Actions.
After the publishing of the European Commission’s Beating Cancer Plan, we spoke up at the European Parliament’s BECA committee hearing. As a direct result, the Report on strengthening Europe in the fight against cancer – towards a comprehensive and coordinated strategy (2020/2267(INI)) adopted in February 2022 by the European Parliament, for the first time, addressed topics that were completely ignored by the Beating Cancer Plan, such as fertility. In it, the European Parliament “calls on the Commission and the Member States to plan actions that promote, in the context of care and treatment, greater attention to the protection of patients’ fertility, in particular in the case of paediatric and juvenile cancers” & “strongly urges the Member States to ensure that all cancer patients are fully informed about the possibility of fertility preservation procedures prior to the start of active treatment; calls for the development of guidelines at EU level for health professionals, defining the age at which cancer patients should be informed about the availability of reproductive health procedures; encourages, furthermore, the Member States to make provision for all cancer patients covered by compulsory national health insurance to be reimbursed for such services by national health insurance schemes”
Youth Cancer Europe is also participating in three distinct thematic Stakeholder Contact Groups facilitated by the European Commission on Europe’s Beating Cancer Plan:
“Childhood Cancer” thematic group
“Quality of Life” thematic group
“Reducing inequalities” thematic group
In these contact groups YCE provides input to the Commission on the implementation of the Europe’s Beating Cancer Plan and the Horizon Europe Cancer Mission in areas under the remit of the thematic group. These groups will work in synergy with other already existing Commission stakeholder groups and consultation mechanisms.
Our research activities include evidence and gap mapping to assess currently accessible fertility presentation and fertility treatment options and costs across Europe, as well as an online survey and qualitative study to understand the lived experience of young adults with cancer regarding fertility preservation and fertility assistance and cancer survivors’ attitudes on building a family.
In 2022 YCE launched a Survey on Awareness and Accessibility to Fertility Preservation Procedures in Europe, to better understand young people’s awareness on fertility preservation and its relationship to quality of life and mental health. The respondents were over 600 cancer patients and survivors, aged 15 to 39 at diagnosis, recruited across a wide European region.
The study reveals that about 28 % cancer patients did not discuss medical options for fertility preservation with their healthcare provider, with the Eastern European Countries reporting the lowest rates of involvement in fertility discussions. Furthermore, respondents who were not informed about available fertility services reported the lowest quality of life, fertility-related concerns greatly impacting their level of anxiety and depression.
Based on our findings we can conclude the following:
within Europe, there are significant cancer-related fertility inequalities between countries and healthcare systems;
accessible fertility preservation programsshould become an integral part of cancer rehabilitationfor young people and they should be actively included in the development of any novel guidelines;
young people’s mental health and quality oflife may be compromisedby fertility-related distress and should be monitored throughout the cancer continuum.
Read more about the online survey methodology here.
As part of Youth Cancer Europe’s advocacy work, we joined the world’s largest international community of cancer experts at the Union for International Cancer Control (UICC) World Cancer Congress (WCC 2022) in Geneva, where YCE was invited to host a round table. In the session we discussed findings and clinical implications from the results of a pan-European survey of young people and presented novel evidence on FP access and awareness. Using a holistic and cross-sectoral approach, together with a group of experts, the session provided pragmatic, evidence-based, acceptable and scalable solutions to reduce cancer-related fertility inequalities among young people. Round table panellists included Dr. Richard Anderson Professor of Clinical Reproductive Science, University of Edinburgh; Max Williamson medical student at University of Oxford, BSc in Biomedical Sciences at UCL, patient advocate and representative for the NCRI Teenage and Young Adult/ Germ Cell Tumour Research Group; Katie Rizvi founder of Youth Cancer Europe; Dr Anja Borgmann-Staudt professor and medical doctor. The session was chaired by Dr Urška Košir, scientific advisor and advocate with Youth Cancer Europe, lecturer at the University of Oxford. YCE’s recorded session for the WCC 2022 can be watched in full above. 👆
Next up, in November, YCE’s Urška Košir will represent us at the ECO Summit 2022 in Brussels, speaking on fertility preservation and quality of life among adolescent and young adult cancer patients across Europe.
Fertility impairment prevention, fertility preservation and fertility treatment (including assisted reproduction) continue to be very high on YCE’s agenda and are topics YCE represents in many European and international networks and consortiums, such as ENTYAC and EU-funded projects StrongAYA and EU-CAYAS-NET
This project would not be possible without the generous support of YCE’s sponsors:
Inspiration Family is a charitable fund to support adult cancer patients in Ukraine.
Inspiration Family is a charitable fund to support adult cancer patients in Ukraine.
Directions of the fund’s activity:
Systemic changes in the field of oncology
Emotional and informational support
Education about cancer
Who created the Inspiration Family?
Five ladies who underwent cancer treatment – Anna Uzlova, Daryna Brikaylo, Inessa Matyushenko, Yulia Balan, Mila Reutova.
We separately founded our own public organizations in 2017: Cancel/R, Soul Sisters and Kvant. We did small projects to support cancer patients, got acquainted and understood that we all want one thing – systemic changes in the country regarding oncology in Ukraine.
Named the association Inspiration Family, which in September 2020 became a fund to support adult cancer patients.
Support for cancer patients during the war.
We are currently working in the following areas:
We are collecting and providing up-to-date information on the work of oncology centers in Ukraine and the list of services they provide;
We are providing information on the receipt of humanitarian aid to specific oncology centers in Ukraine;
We are collecting information from foreign clinics and coordinate patients to continue treatment;
We are submitting requests for humanitarian aid.
On February 24, 2022, Russia started a war with Ukraine. Despite threats from Russia, we still did not believe that the war would begin. The entire population of Ukraine has landed in a difficult situation and many have been forced to escape from the country, but people with serious illnesses have been hit in the hardest manner. Nowadays, cancer patients need support more than ever, so we continue to work harder and help adult cancer patients in these difficult conditions.
First of all, we are looking for an opportunity to continue the treatment of cancer patients in Ukraine, to provide information about the work of oncology centers and the import of humanitarian aid. However, despite the fact that it is now possible to continue treatment in any oncology center in the country, regardless of the place of registration, not all patients are able to continue treatment in Ukraine due to lack of drugs, limited laboratory work, limited access to diagnostic procedures, radiation and surgery and provision of services.
Only in case we find out that the patient is not able to continue treatment in Ukraine, we recommend him to go abroad to continue treatment.
We are grateful to all countries and foreign clinics that provide assistance to Ukrainian cancer patients! You are saving the lives of our fellow citizens, relatives and friends and our nation will always be grateful to you!
