The Survivorship and Quality of Life Network is one of the European Cancer Organisation’s Focused Topic Networks, established as part of our Strategy for 2020-2023.
Our Network proposes the following seven priorities to National Governments, the European Union, WHO Europe and others in order to bring about a paradigm change in how health systems take better account of the Survivorship and Quality of Life challenge in cancer care:
Health systems should incorporate psycho-oncology services as an integral component of the comprehensive multidisciplinary care that needs to be provided to cancer patients and survivors throughout the cancer journey. In this aim, we recommend urgent action around four priorities:
Firstly, European countries must seek to ensure the provision of sustained financial resources to psycho-oncology services. At the national level, this can be achieved through dedicated provisions within national cancer control plans. At an EU level, support could be provided through the EU4Health Programme, the EU Cancer Mission and other funding instruments. Access to psycho-oncology services could be monitored via a new European Cancer Dashboard.
Secondly, the EU and its Member States must act to elevate education and training in cancer survivorship and psycho-oncology, by:
• Supporting the establishment of a European survivorship professional certification, with a strong psycho-oncology core;
• Sharing, identifying and implementing best practices to ensure that all primary care and oncology professionals have at least a basic education and training in cancer survivorship; and,
• Examining opportunities for the Professional Qualification Directive to support better integration of survivorship within minimum training requirements of relevant healthcare professionals.
Thirdly, European- and national-level guidance should be produced to allow for a consistent and a coordinated management of psycho-oncology care needs throughout the entire care pathway. Such guidance must include strong components on such elements as:
• Supporting the setup of multidisciplinary teams including psycho-oncologists;
• Defining the roles and responsibilities of the different groups of healthcare professionals in the provision of psycho-oncology;
• Ensuring provision of consistent advice and information to affected individuals; and
• Establishing smooth communication procedures as well as robust referral pathways from primary care providers and oncological treatment specialists to trained psycho-oncologists.
Finally, the EU must make best use of important ongoing initiatives, such as the European Health Data Space and the EU Cancer Mission’s Patient Digital Centre, to enable broad and consistent monitoring of long-term outcomes of cancer patients, including psychological impacts.
In the context of ongoing important initiatives in cancer policy, such as the Europe’s Beating Cancer Plan, we call for the adoption of a holistic approach to cancer survivorship and quality of life, giving attention to all impacts of cancer and cancer treatment on long-term patients and survivors, including those of physical nature.
The EU, its Member States, WHO Europe and others should come together to urgently accelerate the development of the provision of specialist, cancer supportive and palliative care. Key actions to be conducted include:
• Fostering the adoption of appropriate education and training initiatives in the field of cancer supportive and palliative care in European countries, guided by European-level advice to health systems, and sharing of good practices;
• Providing sustained investment to the development of specialist, cancer supportive and palliative care services in European countries, through national and European funding mechanisms;
• Promoting quality assurance mechanisms for the provision of supportive and palliative care to cancer patients, through the recognition of European guidelines and accreditation systems developed by relevant expert communities;
• Stimulating further research into the development, assessment and optimisation of supportive and palliative care interventions in Europe, notably through the EU Cancer Mission.
Further to the management of these long-term impacts of cancer and cancer treatment, their high and increasing human and economic cost for the community calls for them to be better taken into account by health systems as a whole. As part of a paradigm change of healthcare systems towards the achievement of optimal quality of life throughout the entire cancer journey and in the context of relevant initiatives, such as the European Semester processes, the ‘State of Health in the EU’ and the new EU Pharmaceutical Strategy, opportunities should be explored to build on existing instruments in order to define, establish and/or use long-term physical impacts of cancer and cancer treatment, such as pain, as indicators in the assessment of healthcare systems’ quality58. National efforts to improve supportive cancer care should be included within a European Cancer Dashboard.
Elevating provision of sexual medicine and addressing unmet needs of cancer patients and survivors in sexuality-related issues need to be made an integral part of the development of a holistic European agenda for cancer survivorship and quality of life.
Sexual medicine should be included in all initiatives aimed at developing provision of supportive care in Europe. This should be achieved through investments in training, education, relevant services and research.
The awareness of all healthcare professionals, including oncology specialists and primary healthcare providers, should be raised about the sexuality-related issues faced by cancer patients and survivors, as well by their partners. This educational and awareness raising effort should include dedicated attention to the needs of sexual minorities.
The EU Cancer Mission and Horizon Europe research programme should include parameters of sexual orientation in relevant aspects of its supported research and rehabilitation studies.
Dedicated attention is needed to meet the growing challenge of cancer comorbidities and complications.
This includes resolving current systemic deficiencies that hamper access of affected patients to adapted and comprehensive treatment and care. The following actions should be urgently considered:
• Leverage existing EU funding programs for research on cancer to include complications and comorbidities related to cancer and cancer treatment, aiming at improving understanding of their causation and impact, as well as at establishing adapted treatment and care strategies to address them, and at better preventing them through optimisation of cancer treatment;
• Foster sharing and implementation of best practices to take better account of comorbidities and complications within cancer clinical trials, as well as to ensure the access of affected cancer patients to curative treatment;
• Upscale efforts to bring about coordination and integration of primary and secondary care for cancer patients, with a particular attention to the management of comorbidities and complications; and
• Embed a provision dedicated to cancer comorbidities and complications within a new European professional survivorship certification, and support the inclusion of this aspect in education and training opportunities for oncologists and healthcare professionals as a whole.
Patient empowerment and information should be central considerations and points of response for the EU, WHO Europe and any other European or international organisation formulating guidance, advice or best practices to be applied by national health systems in respect to cancer survivorship and quality of life.
Support should be provided to patient organisations and others to conduct and build on patient empowerment and patient information initiatives. This could notably be achieved through official endorsement of such initiatives, support to dissemination efforts and provision of funding through mechanisms such as the EU4Health Programme.
In line with the European Code of Cancer Practice (Rights 7, 9 and 10), European cancer initiatives, at EU and WHO Europe level, should give significant attention to the Return to Work needs of cancer patients, survivors and carers. Monitoring, assessment and sharing of national best practices in this area should be a strong element of pan-national action. The mandate of, and instructions to, the European Agency for Safety and Health at Work (OSHA) to conduct such activity should be refreshed in the context of the Europe’s Beating Cancer Plan. The EU Pillar of Social Rights, and its Action Plan expected in 2021, provide a further opportunity in this respect.
All national cancer plans should include components to address Return to Work and rehabilitation needs, including the strengthening of primary care, and further actions to better coordinate primary and secondary care.
Large employer organisations should have in place clear guidance and systems to ensure employees with, or who have survived cancer, or are caring for someone with cancer, are fully supported and enabled to continue their work, ensuring reasonable, flexible workplace adjustments116.
Further research efforts in this space are called for, including in respect to cancer patients and survivors who return to work and then leave the workforce soon after, and the reasons for this.
Based on established consensus within the European cancer community, we repeat our call for the right of cancer survivors, when accessing financial services, not to declare their cancer ten years after the end of the active treatment and five years if they had cancer under 18, to be codified across European countries by 2025.
To achieve this goal, following actions should be urgently considered:
• The European Insurance and Occupational Pensions Authority should issue guidance to insurers about the ethical principles that should apply in respect to cancer patients and cancer survivors insurance applications. This should include travel insurance, critical illness policies and definitions of cancer used by insurance companies.
• An EU level comparative study of EU Member States approaches towards ensuring the rights of cancer survivors to access financial services in a fair manner should be conducted.
• National Governments should recognise the inequities and disparities that exist within the financial service landscape in respect to cancer survivors, have assessed their national legal frameworks accordingly, and proposed remediating measures, learning from the experience of France, Belgium, Luxemburg and Netherlands in this respect. This recognition could be expressed via a set of European Council conclusions.
Additionally, in the context of the forthcoming Europe’s Beating Cancer Plan and EU Cancer Mission, urgent consideration should be given to the possibilities of a pan-European solution for the implementation of the ‘Right to Be Forgotten’ for cancer survivors, such as through a revision of the EU Consumer Rights Directive.