Vienna 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, compared to their peers, survivors of childhood, adolescent and young adulthood (CAYA) cancer have a higher risk of health problems and psychosocial consequences related to survivorship, so this growing population needs age-appropriate, comprehensive long-term follow-up care and social support in order to enjoy optimal quality of life and healthy survivorship.

Mental health and psychosocial challenges are underestimated and often neglected aspects in CAYA cancer survivorship, even though a significant proportion of survivors suffer from severe problems such as depression, anxiety, fatigue, neuropsychological impairments and suicidal thoughts. CAYA cancer survivors are less likely to have higher education or full-time employment. In addition, the quality of psychosocial care can vary greatly - not only between but also within countries, depending on the local hospitals. This emphasises the high need to improve psychosocial support services to adequately address the mental health of CAYA cancer survivors, including educational and career support.

The EU-CAYAS-NET project, co-funded by the European Union and including over 40 organisations from 18 countries, therefore pursues the following objectives in the field of psychosocial care:

1. Raise awareness of the importance of mental health and psychosocial care for CAYA cancer survivors.
2. Better understand the current status and gaps in psychosocial care across Europe.
3. Develop a standard for mental health and psychosocial care for CAYA cancer survivors, including materials to support its implementation

Access to optimal psychosocial care improves the quality of life for every child, adolescent and young adult in Europe after their cancer treatment and supports them to reach their full potential. Moreover, investing in effective psychosocial care not only benefits the individual survivor but will also reduce the burden on the national healthcare system and society as a whole by making more efficient use of resources.

Methodology of the work on mental health and psychosocial care as part of the EU-CAYAS-NET project

Within EU-CAYAS-NET, throughout 2023-2024 via comprehensive multi-stakeholder participation, a holistic approach was taken to identify existing best practices and understand the nuanced needs and preferences of young cancer survivors regarding mental health and psychosocial care.

Better understanding the current status and gaps: A Europe-wide survey was conducted among CAYA cancer survivors to gain knowledge about current Long-Term Follow-Up care (LTFU), with a special focus on mental health and psychosocial care across Europe. Furthermore, best practices and gaps in those areas should be identified. In order to get the most comprehensive picture possible, a separate survey for Health Care Professionals (HCPs) was conducted.

The survey was filled in by 195 survivors from 24 countries. Results showed that there is a lack of information and surveillance on mental health issues in our target group. Additionally, there is a big gap between the needs of survivors regarding psychosocial problems (e.g. financial issues, social relations/friendships, anxiety, fatigue or neuropsychological issues) and the support they received. The survivors felt like there is not enough attention to psychosocial late effects in LTFU care. Some of the barriers to receiving psychosocial care that were most commonly described are financial issues and a lack of LTFU institutions offering psychosocial support.

The survey for HCPs was answered by 11 (teams of) HCP from 7 countries. A common theme that emerged is the stigma concerning mental health and psychosocial problems, but also a lack of information about available support services, which can make it harder for young survivors to seek help. The participating HCPs wish for accessible, low-threshold psychosocial care services so every survivor can receive the help they need.

Development of awareness materials: One core outcome of the project is the development of a pocket card set to increase awareness about common mental health and psychosocial late effects. Aimed at young people living with and beyond cancer as well as their carers, HCPs and patient representatives/organisations, the pocket cards can be utilized to support dialogue and as a tool for policy work. They will be openly available online, in print format and translated into at least 8 different European languages.

Development and dissemination of a joint standard for psychosocial care after CAYA cancer for Europe: All data collected were analysed to get extensive insight in the needs and preferences as well as barriers and facilitators in organising and implementing psychosocial care. The results, together with existing knowledge from previous initiatives were integrated into a joint standard for psychosocial care after CAYA cancer. Our approach ensured insights from the perspectives of multiple stakeholders. It allowed a broad overview of the European situation, taking into account the unique needs and circumstances of the individual survivors and psychosocial care services across Europe.

Proposed set of actions

The proposed set of actions listed below address critical gaps in psychosocial care for young cancer survivors and aim at improving access to adequate support across Europe, adapted to the specific national and healthcare settings.

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

2. National healthcare systems must adhere to existing European evidence-based clinical practice guidelines to ensure a minimum standard of psychosocial screening and follow-up care.

   • Existing guidelines give guidance to e. g. the monitoring and management of late-effects related to mental health, education and vocational status, fatigue as well as psychosocial impacts of physical long-term side effects of the cancer and its treatment.
   • The EU-CAYAS-NET European Joint Standard of Care serves as a blueprint for healthcare providers. It outlines best practices and integrates evidence- as well as consensus-based analysis of needs and preferences of young cancer survivors.
   • The jointly developed awareness materials provide additional orientation to navigate various psychosocial challenges. They aim at improving access to state of the art psychosocial care and help facilitate implementation in clinical practice.

3. Psychosocial care must be implemented as an integral part of life-long follow-up care programs to ensure holistic support to young cancer survivors.

   • In order to comply with the latest European standards, such programs need to be designed in accordance with the latest European Psychosocial Standards of 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 such programs.
   • National and cultural contexts must be considered during the implementation.
   • A survivorship care plan including regular screening of psychosocial wellbeing is recommended to be used

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

   • State of the art psychosocial follow-up care programs offer comprehensive support services, including age-appropriate and person-centred social, psychological, educational and vocational support.
   • Public funding is a key-factor for implementing and sustaining successful and effective psychosocial follow-up care. The lack of dedicated funding is a critical barrier in many European Union Member States, resulting in the lack of mental health and psychosocial care services in place.
   • Training and upskilling of the healthcare providers to deliver state-of-the-art psychosocial care must be an integral part of funding.

Implementing these solutions will critically improve availability of and access to psychosocial support for young cancer survivors. This will improve their quality of life and will contribute to better health outcomes, long-term wellbeing, and facilitate a smoother reintegration to 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 (Childhood Cancer International – Europe & Medical University of Vienna), commit to submit the proposed set of actions to the European Commission with the objective to work together to push for access to optimal psychosocial care for every European childhood, adolescent and young adult cancer survivor.

Vienna, signed on 27. June 2024:

Signatories

The published PDF leaves the signature space below the date blank. The declaration carries the logos of the following EU-CAYAS-NET partner organisations:

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

Note on languages

The PDF is bilingual: the English text above is printed in the left column and a German version ("Die Wiener Deklaration – Verbesserung der psychischen und psychosozialen Gesundheit von Survivors einer Krebserkrankung im Kindes-, Jugend- und jungen Erwachsenenalters") 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.