Barcelona Declaration

Background information

There are over 500,000 young cancer survivors, aged 14-39 living in Europe. Thanks to advancements in medical treatments, the survival rate stands at an encouraging 85% in developed European countries. However, there are disparities between European countries, both in terms of survival rates and the way in which post-treatment care is organized.

75% of survivors of childhood, adolescent, and young adult cancer (CAYAS) develop late health problems that need life-long follow-up care. Depending on the type of cancer, its stage, and subsequent therapy, these late effects can vary greatly. Tailored Long-Term Follow-Up (LTFU) care should therefore be standard to minimize the burden of these late effects and their negative impact on the quality of life of survivors. Unfortunately, the majority of survivors within Europe do not receive adequate LTFU care and there are large differences between European countries. As a consequence, many survivors are "lost to follow-up" due to a lack of appropriate follow-up care after treatment. It is time for a change!

The EU-CAYAS-NET project, co-funded by the European Union and including over 40 organizations from 18 countries, aims to identify both best practices as well as gaps in LTFU care to develop a roadmap on how to implement optimal LTFU care across Europe. In addition, evidence-based follow-up care recommendations for no less than 45 different kinds of late effects after CAYA cancer are made available to young cancer survivors in plain language. These PanCare PLAIN brochures support survivors in their health management by providing them with understandable knowledge about their needs for LTFU Care.

Access to optimal LTFU care improves the quality of life for every child, adolescent, and young adult in Europe after their cancer treatment and enables them to better fulfill their potential. Moreover, investing in effective long-term survivorship care not only benefits the individual survivor but will also minimize the burden on the national healthcare system and society as a whole by making more efficient use of resources and placing lower pressure on social funds.

Methodology of the work on late effects and long-term follow-up care as part of the EU-CAYAS-NET project

Within the EU-CAYAS-NET project, throughout 2023-2024 via comprehensive participation from all stakeholders, a holistic approach was taken to identify existing best practices and understand the nuanced needs and preferences of young cancer survivors regarding late effects and long-term follow-up (LTFU) care. This involved a survey among both cancer survivors and healthcare professionals, workshops to identify needs, preferences, and barriers in implementing LTFU care with survivors, parents, and healthcare professionals, and three peer visits to renowned best practice centres: The Princess Maxima Center in Utrecht, the Netherlands; Sant Joan de Déu in Barcelona, Spain; and the Medical University of Vienna, Austria.

The survey was conducted among survivors and healthcare professionals from across Europe allowing to map the current situation and needs for LTFU care in the various countries. The workshops gave deeper insight into perceived barriers and facilitators in implementing and attending LTFU care from the perspective of survivors, parents, and healthcare professionals. During the peer visits, the participants experienced the practices and environments of the visited institutions. Utilizing peer observation forms, they documented their observations, noting both positive aspects and areas for improvement. This structured approach allowed for a detailed examination of the LTFU care in place. Next to these activities the project also focuses on further improving existing materials and developing information for survivors to empower them to take care of their own health and needs for LTFU care. Examples of this include webinars on long-term follow-up care and fertility and the improvement of PanCare PLAIN language brochures providing easy-to-understand information on late effects based on the PanCare FollowUp and IGHG guidelines. This information is made freely available on the PanCare website.

All data collected from the workshops, peer visits, and surveys were analyzed to get extensive insight into the needs and preferences as well as barriers and facilitators in organizing and implementing LTFU care. These outcomes were, together with existing knowledge from guidelines and previous EU projects, integrated into a roadmap and recommendations for the implementation of optimal LTFU care. This approach ensured insight into the needs and preferences from the perspective of multiple stakeholder groups and a broad overview of the European situation while taking into account the unique needs and circumstances of the individual survivors and health care systems across Europe.

Proposed set of actions

The proposed set of actions listed below addresses the critical gaps in LTFU care for young cancer survivors to ensure that they have access to adequate support across Europe, adapted to the specific national and healthcare settings.

1. A section on long-term follow-up care must be included in the National Cancer Control Plans as an integral part of person-centred life-long follow-up care of young cancer survivors.

2. National healthcare systems must adhere to the European evidence-based clinical practice guidelines to ensure a minimum standard of good long-term follow-up care.

   • The PanCare and IGHG guidelines give guidance to the monitoring and management of late effects.
   • The European guidelines serve as a blueprint for healthcare providers, outlining best practices and protocols for supporting young cancer survivors.
   • Drawing on the latest research and expert consensus, the guidelines offer clear recommendations on when and how to monitor CAYA cancer survivors.

3. Long-term follow-up care programs must be implemented to provide tailored support to young cancer survivors.

   • In order to comply with the latest European standards, these programs need to be designed in accordance with the PanCare recommendations for long-term follow-up care, ensuring consistency and quality across different healthcare settings in the European Union.
   • Provision of comprehensive support services that address the diverse needs of young cancer survivors must be at the core of these programs.
   • National and cultural context must be considered during the implementation.
   • A survivorship care plan with treatment history and recommendations for follow-up is recommended to be used.

4. The development and implementation of long-term follow-up care must be supported via joint action programs between the European Commission and national governments.

   • State-of-the-art long-term follow-up care programs offer comprehensive support services, including age-appropriate psychosocial support, education on managing the long-term effects of cancer and its treatment, the proper transition from the paediatric to the adult healthcare setting as well as guidance on navigating the adult healthcare system.
   • Public funding is a key factor for implementing and sustaining successful and effective long-term follow-up care. The lack of dedicated funding is a critical barrier in many European Union Member States resulting in the lack of long-term follow-up care plans in place.
   • Training and upskilling of the healthcare providers to deliver state-of-the-art long-term follow-up care must be an integral part of funding.

Implementing these solutions will ensure that young cancer survivors will have access to potentially life-saving long-term follow-up care services. This will improve their quality of life and will contribute to better health outcomes, long-term well-being, and a smoother reintegration into society.

We, the undersigned parties, express our support for the proposed set of actions and commit to work together towards its implementation. The partners of the EU-CAYAS-NET project, including the host of the local political event (FSJD), commit to submit the proposed set of actions to the European Commission with the objective to work together to push for access to optimal long-term follow-up care for every European childhood, adolescent and young adult cancer survivor.

Barcelona, signed on 22, October 2024

Signatories

The declaration carries the logos of the following organisations.

EU-CAYAS-NET project partners

• Childhood Cancer International – Europe
• European Network of Youth Cancer Survivors
• Youth Cancer Europe
• SIOP Europe – the European Society for Paediatric Oncology
• SJD Sant Joan de Déu – Fundació de Recerca
• SJD Sant Joan de Déu – Barcelona Hospital
• POLA – Pagalbos onkologiniams ligoniams asociacija
• PanCare – Pan-European Network for Care of Survivors after Childhood and Adolescent Cancer
• Medizinische Universität Wien
• Pintail
• Prinses Máxima Centrum kinderoncologie

Supporting organisations

• ASION – Asociación Infantil Oncológica de Madrid
• Societat Catalana de Pediatria
• Candela – Polsera Solidària per la investigació del càncer infantil
• SEPO – Sociedad Española de Psicooncología (1997-2022, 25 años promoviendo la psicooncología)
• Aspanogi – Asociación de Familias de Menores con Cáncer de Gipuzkoa
• Asociación Española Contra el Cáncer
• La Fe – Hospital Universitari i Politècnic
• Fundació d'Oncologia Infantil Enriqueta Villavecchia
• Fundación Aladina
• Aspanovas
• IMIB – Instituto Murciano de Investigación Biosanitaria Pascual Parrilla (with Área I Murcia Oeste and Universidad de Murcia)
• AOEX – Asociación Oncológica Extremeña
• Argar – niños con cáncer
• ASANOG – Asociación de Ayuda a Niños Oncológicos de Galicia
• ADANO – Asociación de Ayuda a Niños y Niñas con Cáncer de Navarra
• Salut / ICO – Institut Català d'Oncologia
• Hospital General Universitario Gregorio Marañón (SaludMadrid)
• Niños con Cáncer – Federación Española de Padres
• Niños con cáncer – Afanion
• Niños con cáncer – Aspanion
• Niños con cáncer – ANDEX
• Niños con cáncer – ASPANOA
• Niños con cáncer – A.L.E.S.

Note on languages

The PDF is bilingual: the English text above is printed in the left column and a Spanish version ("Declaración de Barcelona – Mejora del seguimiento a largo plazo para los Jóvenes Supervivientes de Cáncer") in the right column.

Funding and disclaimer

Co-funded by the European Union. Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or HADEA. Neither the European Union nor the granting authority can be held responsible for them.