Policy Brief – Survivorship is cancer survivorship the poor cousin of cancer control within the EBCP?

Abstract

Background

There is an increasing number of cancer survivors, including children, adolescents, young adults, individuals of working age, and the elderly, within the Belgian and European population. Yet, survivorship care and rehabilitation are often treated as an afterthought in care organisation. This not only directly affects the quality of life of survivors and carers, but also puts the sustainability of the healthcare and social security systems at risk.

Methods

We analysed the ongoing Europe Beating Cancer Plan (EBCP) to identify the actions supporting survivorship (care) developments, then compared their weight in the EBCP to the other domains of cancer control. Following this analysis, and comparison with related ongoing projects, and current infrastructure in Belgium, several unmet needs were identified.

Conclusion

To better address these unmet needs, we recommend that Belgium incorporates survivorship care and long-term follow-up in clinical guidelines and care pathways, and considers including indicators related to cancer survivorship in the planning and design of quality insurance schemes, including certification of comprehensive cancer centres. Furthermore, we suggest further investment and support for research and knowledge exchange in the field of survivorship.

Introduction

The prevalence of cancer survivors is growing every year (around 3% per year), and is now estimated at over 12 million survivors in Europe, with about 300.000 childhood cancer survivors [1]. The five year survival rates for all cancers combined is 71% for the 2014–18 period in Belgium [2].

Cancer survivors experience a wide range of problems related to physical and mental functioning, including symptoms such as fatigue and pain, sexual problems, issues related to body image, distress, fear of recurrence, in addition to cognitive, social and physical functioning [3].

Improvements in prevention, diagnostics and treatment are key elements for cancer control, leading to increases in survival. However, relative to the medical and technical developments, there is less focus placed on adequately addressing the plethora of challenges associated with cancer survivorship.

In spite of relative recent attention attributed to survivorship, the work that remains is colossal [4, 5]. It is urgent to address these challenges to ensure high quality long-term care and quality of life for cancer survivors.

Methodology

The issue overview, gaps, and recommendations were identified in a participative manner with Belgian Europe’s Beating Cancer Plan (EBCP) Mirror Group on Survivorship. The group consists of more than 50 members, with representatives from patient organizations, NGOs, hospitals, professional organizations, registries and universities.

Building off evidence-based recommendations on survivorship from the Joint Action CanCon [6], the Belgian EBCP Mirror Group on Survivorship [7] developed concrete recommendations to improve survivorship care in Belgium. They did so by reviewing the 42 actions of the EBCP and assessing these actions for opportunities to address cancer survivorship issues. They then compared the actions in EBCP and the evidence based recommendations from CanCon with current open calls and/or ongoing projects at the EU-level in which cancer survivorship is addressed. Synergies with the Belgian context were then identified and the extent to which the EBCP projects could benefit to the Belgian Handbook for Supportive Care were assessed (Table 1). The main objective of this work was to identify the challenges hindering the rehabilitation and the quality of life of cancer survivors.

Table 1 The selected list of EBCP actions and their potential impact for survivorship (care) and related infrastructure in Belgium, and the gaps between the two

Issue overview

Survivorship has often taken a back seat to other elements in the patient pathway. Treatment toxicities, physiological and psychosocial (late) effects, overconsumption of drugs and drug interactions, management of comorbidities, etc., should be at the heart of survivorship initiatives in Belgium, but also at the EU level. Survivorship remains important for the entire Belgian and EU population; from youth, to people aged over 65 years. The latter remains particularly important as while Europe is an aging continent, most Member States do not consider survivorship care as a necessity in public health care systems.

In 2017, under the framework of the Joint Action CanCon, EU experts worked together to develop evidence-based recommendations to improve the integration of cancer survivorship and rehabilitation in national cancer control programs [8]. In addition to these recommendations, the Mirror Group’s review of the EBCP actions, and discussions of opportunities for survivorship in Belgium, resulted in four priority proposals:

• I. Creation of a national cancer survivorship portal to improve the ‘information and communication’ among professionals and patients

• II. The development of a generic cancer survivorship care pathway (SCP) and the setup of a recovery convention, ensuring equal and high-quality survivorship care for all cancer patients

• III. A pilot of the SCP and research efforts for its monitoring and evaluation

• IV. Development of local networks of oncological aftercare

The submission of these recommendations for action to the Ministry of Public Health and the underlying discussions led to the decision to start with the development of a Handbook for Cancer Supportive Care [9].

In the following parts of this policy brief we will (1) examine the extent to which the activities in Belgium and in the EBCP address the areas for development, and (2) present recommendations for persistent gaps that are not currently addressed.

Survivorship in the EBCP: results from a gap analysis

We screened the 42 actions of the EBCP on their opportunity and relevance to address cancer survivorship. Three out of the 42 actions of the EBCP directly address survivorship. Chapter 6 of the EBCP, ‘Improving the Quality of Life for Cancer Patients, Survivors, and Carers’, includes the most initiatives related to cancer survivorship. The first of these actions is the flagship ‘Better life for cancer patients’, which focuses on the development of the Cancer Survivor Smart-Card (34.1) and the creation of a framework for data storage and exchange (34.2). The second is action 35, which foresees the development of a code of conduct for access to financial services, which can be regarded as a step back compared to the Right to be forgotten. The third is action 36, which concerns the legal frameworks of the work conditions for cancer survivors and their social security status. It should also be noted that the terms ‘survivors’ and ‘survivorship’ also appear in chapters 5.1 on ‘delivering higher-quality care’ (for the creation of an EU network of expertise), 5.2 on ‘ensuring a high-quality workforce’ (for the training of the health workforce), and 8 on ‘putting childhood cancer under the spotlight’.

Twelve other actions were identified that could potentially have an impact on cancer survivorship. This offers considerable room for manoeuvre, and to highlight the topic of survivorship in future projects and work programmes.

The following table presents the aforementioned actions, their potential impact for survivorship, the possible impact of the action on survivorship care, followed by a presentation of the existing infrastructure in Belgium, and the gaps between the objective of the action and the infrastructure in Belgium. This final column details the gaps and is the basis of the policy recommendations presented in the subsequent section.

Policy recommendations

The EBCP funded projects and programs are still ongoing and the overview provided in this policy brief is not comprehensive. Cancer survivors are not forgotten in the EBCP and several chapters include them in some extent. In Belgium, several initiatives related to survivorship have been identified. However, unmet needs among cancer survivors are still numerous [10]. In this section we detail our recommended actions to overcome the challenges associated with these unmet needs.

First, through our analysis, it is clear that high quality survivorship care and its organization are side-lined in chapter 5 (high standards in cancer care). This creates unnecessary partitioning between survivorship care and the diagnostic and treatment phases. Even information systems and monitoring between diagnostics and treatment, and survivorship seems to be the purpose of an distinct initiative (flagship 8). This does not lend to the integration of survivorship care in future care organization developments. This sends a wrong signal to healthcare authorities and professionals. Given that more cancer patients will survive in the future, Belgium and EU countries should implement best practices, and include survivorship care in their clinical guidelines as well as in their care pathways.

Second, at both Belgium and EU levels, the scarce attention given to survivorship in the projects addressing the organization of cancer care, represents missed opportunities to integrate survivorship care in standardized care pathways. This is of tremendous importance as the criteria and indicators being developed, such as those for the certification of comprehensive centres, will exclude survivorship care and rehabilitation from their scope. Health authorities and administrations must pay attention to the provision of indicators related to cancer survivorship when planning and designing quality insurance schemes, including certification of centres.

Third, although recently cancer patients are benefitting from better treatments and care organization, the organization of supportive care is lacking, for various reasons [10]. There is a need to ensure that cancer patients and survivors also benefit from innovations, just as patients under treatment do. In that vein, support is required to foster more research and knowledge exchange, to confront the lack of evidence in many areas of survivorship.

In conclusion, cancer survivorship care remains an afterthought in care organisation, as if it were an add-on. Given the increase of cancer survivors, their unmet needs may put the sustainability of healthcare and social security systems at risk, and more importantly, their wellbeing and social inclusion. The underlying glaring inequity between survivorship and other cancer care domains is not acceptable and decision-makers should concentrate the efforts in subsequent work programs to get back on track to guarantee quality of life and access to high-quality survivorship care for the 12 million European cancer survivors and their relatives.