Advancing cancer care for adolescents and young adults: the role of the European Network of Expertise

Abstract

Adolescents and young adults (AYAs, aged 15-39 years at cancer diagnosis) are recognized as a distinct patient group with specific clinical and psychosocial needs requiring tailored care. This article presents the Network of Expertise (NoE) on AYAs with cancer developed through the Joint Action on Network of Expertise to strengthen AYA research and care across Europe. The NoE adopts a structured, collaborative approach aligning national and European Union–level goals, creating a platform for professionals, patient groups, and stakeholders to advance AYA cancer care, influence policy, and reduce disparities among member states. It also promotes cooperation between pediatric and adult oncology services to improve care throughout the cancer continuum. The article highlights the main challenges ahead and emphasizes that their successful resolution depends on shared commitment to collaboration—ultimately aiming to enhance outcomes and quality of life for AYAs with cancer.

Highlights

• •Approximately 112 000 Europeans aged 15-39 years (AYAs) are diagnosed with cancer annually.
• •Survival gaps and disparities in AYA cancer care persist across EU MSs.
• •The NoE on AYAs with cancer aims to improve cancer care and equity.
• •The NoE priorities program, guidelines, training, research, monitoring, and policy.

Background

In recent years, the scientific community has witnessed a growing interest in the adolescent and young adult (AYA) patients, i.e. aged 15-39 years at cancer diagnosis. In Europe, 112 000 people/year develop cancer between the ages of 15 and 39 years, corresponding to 5% of all new cancer diagnoses.¹ Although rare, cancer is the fourth leading cause of death in AYAs globally.² In Europe, the 5-year relative survival for all AYA cancer is 84%, ranging from 70% to 90% for most AYA cancers. However, there are differences in survival rates among European countries for almost all cancers, most likely owing to differences in stage at diagnosis, access to treatment, and lack of referral to expert centers. Survival improved over time for most cancers in the 15-39 years age group but for fewer cancers in adolescents and those aged 20-29 years.³ European efforts are needed to improve survival, reduce survival inequalities among countries, ensure continuity of care for AYA patients with cancer, and address the growing number of AYA cancer survivors. These efforts must specifically recognize and address the unique characteristics of this, often underserved, population positioned in a ‘middle ground’ between pediatric and adult oncology.^1,4

AYA patients have several specific characteristics and needs that set them apart from both children and older adults and underpin the challenges they pose in care.⁵

Among these, the key challenges are as follows:

• •Distinct epidemiology and cancer biology.
• •Psychological and social complexities due to developmental stage.
• •Limited access to specialized treatment and clinical trials.
• •Insufficient awareness of the distinct characteristics and needs of AYAs and inequities in systemic/system-level organization of AYA care across Europe.

This has led to the recognized need to develop dedicated models of care and clinical research for AYA patients.⁴ More importantly, there is a growing demand for collaborative work across disciplines and across countries to address AYA specificities at local (within cancer centers) as well as national and international levels through cooperative efforts.⁶

Drawing inspiration from earlier initiatives enacted mainly in pediatric oncology, the importance of involving both the pediatric and adult oncology communities was recognized as being of utmost importance^7,8 and led to the collaboration between the European Society for Medical Oncology (ESMO) and the European Society for Pediatric Oncology (SIOPE), which joined forces in 2017 within a dedicated Working Group (WG) on AYA patients.⁹ The ESMO-SIOPE AYA WG was created primarily for educational purposes to raise awareness about the specific challenges faced by AYA patients and to develop training initiatives for clinicians. However, the WG also outlined major challenges for the clinical management of AYA patients with cancer, stressing the importance of dedicated AYA centers (and increased AYA patient access to clinical trials).¹⁰

In parallel, in 2016, a group of pediatric and adult oncologists established the European Network for Teenagers and Young Adults with Cancer (ENTYAC). Although it has remained a nonstructured, informal collaborative network, over the years, ENTYAC has managed to expand and engage experts dedicated to AYA patients from various disciplines across Europe as well as patient organizations.11, 12, 13

More recently, AYAs have been gaining recognition at the European Union (EU) level with the patient-led European Network of Youth Cancer Survivors (EU-CAYAS-NET) consortium (whose work is now being continued by the European Youth Cancer Network), which, in addition to developing evidence-based recommendations to standardize and improve care for all young people across Europe, also proposed minimum standards for specialist AYA cancer care units.¹⁴ The work of the EU-CAYAS-NET consortium highlights how patient involvement, advocacy, and engagement are foundational to creating health care systems and research approaches that are inclusive, equitable, and effective.

Although all the above have contributed to advancing the awareness of AYA cancer challenges, the AYA community with cancer has also recognized that there remains a pressing need for a cohesive, formally structured network to unite efforts across Europe. This document aims to present the new Network of Expertise (NoE) on AYAs with cancer aimed at supporting cancer research and care for AYAs in Europe and European countries.

The NoE for AYAs with cancer

The NoE is the result of a consensus process reached within the Joint Action on Network of Expertise (JANE).¹⁵ By consensus, AYAs with cancer were identified as a complex oncological population requiring a different approach based on collaboration between the EU and member states (MSs), which could benefit from cross-border cooperation and EU expertise. Hence, the idea was launching an NoE that can exploit expertise and experience to respond to the specific needs of AYAs with cancer.

The NoE on AYAs with cancer was therefore created to do the following:

• •Align national and EU-level objectives.
• •Provide a platform for collaboration among health care professionals, patient groups, and other stakeholders to enhance AYA cancer care, influence health care policy, and reduce disparities across EU MSs.
• •Be the method to achieve our overarching goal of fostering collaboration between pediatric and adult oncology services that can improve care for AYAs across the cancer continuum.

The NoE is based on transparent and inclusive governance that leverages multidisciplinary and multistakeholder engagement. In addition to clinical experts, the governing bodies include scientific societies and patient representatives, and various types of expertise are engaged as needed (e.g. economic and methodological). The NoE includes ∼123 partners from 20 EU countries. The NoE began its work by focusing on five priority areas.

Priority 1: Development of AYA-dedicated programs

The NoE aims to support the implementation of AYA-specific programs across European countries. It is committed to mapping existing AYA cancer care in Europe to raise the profile of the key AYA cancer service characteristics and to share both best practices and best models of AYA-dedicated programs in order to identify solutions for the different contexts across European countries. Examples include building and maintaining collaboration between pediatric and adult units, interinstitutional collaboration, communications that raise awareness, and financial sustainability. The NoE aims to support MSs in identifying potential barriers and enablers for AYA-dedicated program implementation: a specific deliverable will be the implementation of an AYA-dedicated program in at least one MS that did not previously have one.

Priority 2: Development of clinical recommendations

Starting from the mapping of already existing guidelines, the NoE will then identify a priority list of recommendations to develop in synergy with existing expert groups, organizations, and scientific societies. Furthermore, the NoE will set out the methodology for developing clinical recommendations in a context of high uncertainty, as is the case for rare AYA cancer; identify the obstacles that undermine the implementation of the recommendations; and suggest innovative approaches for the implementation of recommendations (such as digital tools or decision support systems). Lastly, the NoE will define plans for monitoring and evaluating the impact of the recommendations at the national level.

Priority 3: Development of training on cancer in AYAs

The NoE aims to develop training courses for different stakeholders, including pediatric and adult oncologists, general practitioners, nurses, psychologists, patients, and patient advocates, at European and national levels, all adapted to national specificities. The long-term goal is to create a curriculum for AYAs with cancer in accordance with the AYA section of the ESMO/American Society of Clinical Oncology Global Curriculum in Medical Oncology, which defines standards in guiding the training of oncologists worldwide on specific topics, including AYA care.¹⁶

Priority 4: Promotion of clinical research about AYA cancer

The NoE considers supporting new collaboration opportunities across scientific societies that promote AYA and transage research to be strategic. A special focus will be to increase access to clinical trials for AYA patients, in particular access to early-phase trials, exploiting both national as well as European and transatlantic initiatives. Based on the ACCELERATE (http://www.accelerate-platform-eu - the working group on fostering age inclusive research) experience,¹⁷ the NoE will create task forces with European pediatric and medical societies in the cancer field to promote early- to late-stage transage trials and FAIR clinical trials for AYAs as a cornerstone of AYA management.

Priority 5: Monitoring AYA cancer indicators

The NoE aims to identify and define quality indicators (QIs) for use in AYA health care monitoring at national and pan-European level. QIs are envisioned as standardized, evidence-based metrics of health care, epidemiological, and clinical outcomes and are useful as benchmarks in supporting the delivery of high-quality care across a variety of European health care settings. Theoretical health care models will be used to ensure full coverage of health care systems by the QIs. The NoE will combine a quantitative and a qualitative research approach including AYAs, their informal caregivers, and health care providers to generate a broad set of AYA-centric QIs. Lastly, exploiting ongoing and future initiatives (such as Strong AYA, the European Health Data Space, Cancer Watch Joint Action on population-based cancer registries, etc.), the NoE will explore and identify different ways to ensure that data required to monitor the QIs identified will be available at Europe and MS levels.

Conclusions

The NoE dedicated to AYAs with cancer offers a unique opportunity to increase dedicated research alongside a holistic approach including prevention, care, and follow-up for this patient population across Europe.

The NoE is now proposed as the ground where collaboration between different stakeholders and pediatric and adult cancer services can be further strengthened to develop actions that address the distinctive challenges of AYA patients with cancer across the different EU MSs. Although pre-existing initiatives such as the ESMO-SIOPE WG, ENTYAC, and EU-CAYAS-NET have made strides in addressing AYA cancer care challenges, the NoE responds to the growing demand for collaborative work across disciplines and countries at the local, national, and international levels with a formally structured, funded, and inclusive network. To this extent, the NoE features a transparent and inclusive governance that aims to actively coordinate with ongoing projects to build on their outcomes, filling gaps and avoiding overlap, thereby maximizing efficiency and reinforcing collective progress across the field. The governance of the NoE specifically prioritizes collaboration through a dedicated WG tasked with strengthening cooperation among partners. Additionally, the Steering Committee plans to engage in ad hoc consultations with key initiatives and stakeholders to ensure alignment and avoid duplication. However, for this to happen, the pediatric and the adult oncological communities must develop a common vision on the needs of young patients with cancer and solutions to enhance research and fill gaps in access to care tailored to AYAs.

The NoE dedicated to AYAs should address currently known challenges:

• •The substantial heterogeneity of care provision for AYA patients across European countries^6,10,12: the NoE includes >20 countries: this can be a challenge but also an opportunity to learn from best practice examples and focus on the shared overarching objectives.
• •The wide age range currently considered for the definition of AYAs, i.e. 15-39 years: There have been long discussions to define these age limits^18,19 and it is certainly not the intention of the NoE to question them; however, it is clear that this broad definition includes a wide range of patients (with very different psychosocial aspects, e.g. concerning maturity or economic independence) and a high heterogeneity of cancer types. In order to address this heterogeneity, potential substratification into diverse patient categories within the 15-39 years age range could be considered to strengthen the clinical perspective. For instance, the 15-24 years age group can be identified as a relatively more homogeneous cohort: these individuals share similar psychosocial aspects that are characteristic of late adolescence and very young adulthood, such as ongoing personality and identity development, early romantic or sexual experiences, continuing academic and professional development, and a lack of financial independence.
• •Integration of the European NoE with the national level of the state where the patient’s care is implemented: In the field of rare cancers, it is acknowledged that health networking is useful at national and/or regional levels and that in order to fully express their potential, European networks should become European networks of national/regional networks. This would leave MSs free to shape them as they see fit (but according to EU-level recommendations), with national/regional networks and institutions simply receiving possible services at the EU level, as needed. Moreover, the NoE on AYAs with cancer will have to understand how to develop the concept of EU networks as ‘networks of networks’ (EU networks of national/regional networks) to be effectively deployed in the real EU world today in full collaboration with MSs.
• •Lastly, the ‘costs’ of health networking have often been overlooked: Health networking is not merely a different way for existing facilities to function and it is not self-sustainable. On the contrary, to function, health networks need dedicated infrastructures, i.e. designated human and logistics resources. Sustainability is a key priority for the NoE, supported by a dedicated task force developing long-term models. Drawing from European Reference Networks, these models combine EU and national funding, with an emphasis on integrating national health care systems. Currently, under the JANE-2 framework, sustainability models for all NoEs are being revised, incorporating evaluative metrics designed to measure impact, stakeholder engagement, and network integration over time. These metrics will guide continuous improvement and demonstrate value to funders and partners. Ensuring sustainability requires maintaining European-level visibility for funding and support, alongside strong national implementation and integration.

We believe that the NoE will be the opportunity to join efforts to ensure the best quality of life for AYA patients with cancer.