An EHA strategic roadmap for improved care in Europe for AYA patients with malignant and chronic non‐malignant hematological diseases

Adolescents and young adults (AYAs) with hematologic diseases have unique needs due to the significant biological, psychological, and social changes they experience. These include questions around sex and gender, fertility and family planning, body image, education and work, and peer/social relationships. A diagnosis during this stage can also disproportionately and negatively affect the quality of life and future prospects for young people.

There is growing evidence that AYA‐specific, multidisciplinary oncology services can positively impact disease‐specific and psychosocial outcomes. However, tailored healthcare for the AYA population is not universally applied or uniformly accessible. Despite population improvements over time, the recently reported EUROCARE study crucially highlighted ongoing age‐specific disparities in cancer 5‐year relative survival rates for AYAs, and an ongoing need for tailored treatment approaches and collaboration across healthcare service infrastructures designed for younger children or older adults, to bridge the survival gap and continue to improve outcomes. ¹ Despite increasing cure rates of hematological malignancies, AYA cancer survivors may be faced with social stigmatization after cure. Thus, an EU‐wide adoption after a unified 5‐year minimum remission period for a concept of the “right to be forgotten” would be crucial to promote equitable access to financial services and to end discrimination against cancer in Europe. ²

Whilst AYA care models have traditionally been centered on supporting young people with malignant conditions, there is increasing recognition that navigating a chronic non‐malignant condition as an AYA is equally complex, and poses a challenge that is relatively unique to the specialism of hematology, falling outside the remit of previous advocacy work led by the field of oncology. ³ This also applies to developing appropriate models for transitioning AYA patients with a chronic non‐malignant condition from children to adult services. ⁴ As such, advocating for the needs of AYAs across the spectrum of hematological conditions requires a distinct focus and approach.

The European Hematology Association (EHA) recognizes that advancing AYA care requires greater knowledge, increased awareness, and ongoing collaboration between pediatric and adult hematologists. To address this need, in mid‐2022, EHA established a taskforce focused on this topic. The EHA Taskforce for Adolescents and Young Adults with Hematologic Diseases (AYA Taskforce) is a multidisciplinary expert group that includes both malignant and non‐malignant hematologists, a specialist nurse, and, since mid‐2024, two AYA patient advocates.

The EHA board entrusted the Taskforce to develop an organizational strategy for AYA patients. The strategic agenda described below lays out a cohesive set of goals that will position EHA as a leading advocate for optimal care for AYA hematology patients. This strategy has been approved by the EHA board on October 21, 2025.

EHA AYA STRATEGY

Goal 1: Analysis—Mapping the current landscape of AYA care across Europe.

The basis for the development and implementation of an EHA AYA strategy is a clear understanding of the current landscape of AYA services in Europe and the differences between countries, including variations in service models, and most importantly, the identification of gaps that need to be addressed.

A key role of EHA is not only to look at AYA services for patients with hematological cancers but to specifically analyze current service provision for AYA patients with non‐malignant disease. In addition, the perspective of AYA patients has been central to the development of the EHA AYA strategy, and their continued involvement is crucial for its successful execution.

A recent European‐wide survey of nearly 1500 healthcare professionals (HCPs) across 43 countries, conducted by EHA, highlights a non‐uniform landscape. ⁵ The lack of a universal age‐based definition for AYAs across European borders leads to “age‐boundary” inequities. Many countries do not recognize AYA as a distinct patient group, resulting in a lack of focus on specific clinical and psychosocial need or tailored service planning (critically including need for structured transition pathways), as well as limited representation in biological and clinical trial research agendas.

The survey further identified a critical gap in AYA service planning for patients with chronic, non‐malignant hematological conditions such as sickle cell disease, thalassemia, or rare bone marrow failure syndromes, as distinct from AYA oncology, where prior efforts driven primarily by the solid tumor field are gaining traction (see European Cancer Plan). ⁶

Goal 2: Improving Standards of Care—Working collaboratively to define AYA healthcare/holistic needs and agree on recommendations for optimal care.

The EHA survey highlighted differences in AYA care between European countries. ⁵ Survey responses articulate a non‐uniform picture of whether, and how, AYA is defined for the purposes of structuring healthcare, and demonstrated a varied provider perception of access to quality, age‐relevant support for young people. Inequity in age‐appropriate provision for AYAs with malignant and non‐malignant chronic hematological conditions, and a paucity of structured support for transition across the age‐boundaries of existing healthcare infrastructure are highlighted as particular challenges to providing optimal support for young people.

Therefore, one of the first steps to improve standards of care will be the development of European consensus recommendations for AYA care that address the gaps identified in our survey and incorporate the views and input from patient advocates.

In addition, there may be a need for disease‐specific AYA guidelines. We will, therefore, engage with the EHA Specialized Working Groups (SWG) to identify gaps in AYA guidelines in their different areas of expertise.

Goal 3: Policy—Promoting optimal care for AYA patients together with key relevant stakeholders in Europe.

Policy and advocacy will also be informed by the analysis of current AYA services and input from patient advocates. The analysis of the survey data provides the basis for EHA policy as it identifies key challenges ⁵ :

• Many European countries do not recognize AYA as a defined patient group

• In those that do, there is no universal consensus as to what the age‐based definition of AYA is—thus, the strategic agenda needs to be applicable across a variety of definitions/interpretations of AYA, and in the context of a variety of different service models

• Varied access to AYA‐specific training for HCPs

• Lack of AYA‐focused research programs to address age‐specific disease differences, or age‐specific holistic needs for AYA patients

• Insufficient policy attention to AYA with chronic non‐malignant hematological conditions

Facilitating the development of European consensus guidelines on AYA service configuration and provision (Goal 2) could be the first big AYA project in the policy and advocacy realm. Working together with our sibling societies and key European stakeholders will be essential to achieving this goal.

The challenge will be to take into account the complex healthcare and holistic needs of this age group and come up with recommendations that can be implemented in various healthcare systems with different models for AYA care, considering the specificities of malignant and non‐malignant disorders as well as the characteristics of the more common disorders and the rare ones.

Goal 4: Education—Increasing availability of training resources/opportunities for HCPs.

One key aspect revealed by the EHA HCP survey was the need to access educational materials for HCPs caring for AYAs, particularly in countries with a lack of AYA infrastructure, and available information materials for patients.

As nurses play a key role in delivering day‐to‐day AYA supportive care and are often the first HCP in addressing sensitive topics, such as sexuality and psychological well‐being, nursing education needs to have a high priority.

It will be important to avoid duplication of efforts from other stakeholders in the AYA space and existing available resources. Therefore, the initial action points to achieve this goal will need to include a scoping exercise of both internal and external resources and activities. A specific role for EHA will lie in the development of education material/content for the care of AYA patients with non‐malignant diseases.

And EHA can champion the role of patient advocates in education. AYA patients should be involved in the education of HCPs, as their personal experience can be invaluable to improving communication, care pathways, and the overall relevance of AYA care.

Goal 5: Research—Facilitating disease‐specific and holistic AYA research projects.

Research for AYA patients is a rapidly growing field, but it still faces significant challenges and gaps. AYA patients, typically aged 15–39, fall into a unique demographic with distinct biological, psychosocial, and economic needs that are not fully met by standard pediatric or adult hematology models.

Areas of research include but are not limited to the following:

• Distinct biology of cancer and disease in this age group (being different both to cancer in younger children and older patients or being subject to different disease trajectories in non‐malignant disorders)

• Transition care

• Survivorship

• Psychosocial impact and quality of life

• Clinical trial involvement

EHA offers a wide portfolio of research grants that can be used to address these topics. ⁷

CONCLUSION

The future of AYA hematology in Europe depends on our ability to bridge the gap between pediatric and adult medicine. As an overarching, multidisciplinary organization, EHA can play a key role in bringing pediatric and adult medicine together on our common vision to champion optimal care for AYA hematology patients. By harmonizing definitions and standards of care highlighting the care needs of AYAs across both malignant and non‐malignant conditions, and embedding AYA‐focused research into our clinical framework, EHA can contribute to the goal that a patient's age is no longer a barrier to optimal health outcomes (Figure 1).

Figure 1.

European Hematology Association (EHA) strategy for adolescent and young adult (AYA) care in Europe.

AUTHOR CONTRIBUTIONS

Anna Castleton: Writing—original draft; writing—review and editing. Sally Batten: Writing—original draft; writing—review and editing. Nicolas Boissel: Writing—review and editing. Yunus Borowczak: Writing—review and editing. Raffaella Colombatti: Writing—review and editing. Robin Doeswijk: Writing—review and editing. Inken Hilgendorf: Writing—review and editing. Charles McGrath: Writing—review and editing. Kim Messelink: Writing—review and editing. Maurizio Miano: Writing—review and editing. Joanne Yacobovich: Writing—review and editing. H. Josef Vormoor: Writing—original draft; writing—review and editing.

CONFLICT OF INTEREST STATEMENT

Raffaella Colombatti sits on the advisory board or has done consultancy for Theravia, Pfizer, NovoNordisk, Agios, and Vertex. She also received research funding from Agios and Vertex.

Inken Hilgendorf is chairperson of the board of trustees of the German Foundation for Young Adults with Cancer and received honoraria from AbbVie, Amgen, Medac, Mundipharma, Novartis, and Takeda.

All other authors declare no conflicts of interest.

FUNDING

This project received no funding.

DATA AVAILABILITY STATEMENT

Data sharing is not applicable to this article as no datasets were generated or analyzed during the current study.