Navigating Sexuality and Mental Health: A Comprehensive Guide for AYA Patients During Hematological Treatment

Adolescents and young adults (AYAs) dealing with hematological diseases face unique challenges. Yet, there’s no clear definition of what an AYA is, and many healthcare professionals lack the tools to discuss important topics like mental health and sexuality openly. This was highlighted during a recent session at the 2025 European Hematology Association (EHA) Congress.

Defining AYA Needs

Anna Castleton, a doctor from Christie Hospital in Manchester, shared insights from a survey of 1,490 healthcare providers in Europe. Nearly 50% did not recognize a specific definition for AYAs in their country. This lack of clarity can affect access to essential services, including psychological support and fertility services. Knowing the definition improves the quality of care available.

Castleton emphasized partnering with organizations that support AYAs to enhance service quality. However, the survey revealed that resources are unevenly distributed, particularly between patients with blood cancers and those with non-malignant diseases. The EHA Taskforce aims to create strategies tailored for AYAs based on this feedback.

What Patients Want

Yunus Borowczak, who was diagnosed with chronic myeloid leukemia at 12, shared his experience. He found that empathetic communication made a significant difference. A doctor who promised honesty about his condition stood out as an ideal example, which he noted is not always the norm.

Borowczak stressed the importance of addressing sensitive topics, such as sexual health. He pointed out that healthcare providers often overlook these discussions, assuming they’re not relevant to young patients. Recent research shows a lack of education on such topics during medical training, reinforcing the need for change.

Addressing Sexual Health

Adam DuVall, a doctor from the University of Chicago, discussed the importance of recognizing how cancer diagnoses impact relationships in AYAs. Many face increased rates of sexual dysfunction, and there’s little research addressing this issue. DuVall’s team is developing educational resources aimed specifically at young female cancer survivors. Early results show promise in improving sexual health, body image, and functioning.

He emphasized that conversations about sexuality shouldn’t be neglected. Instead, they should be integrated into treatment discussions, making it easier for patients to seek help and lead fulfilling lives post-treatment.

The Road Ahead

The panel concluded with a call for improved communication between young patients and healthcare providers. Castleton noted that the survey didn’t go deep enough into sexual health, suggesting a need for better patient advocacy in research design.

Charles McGrath, a patient advocate, highlighted the toll cancer can take on romantic relationships. Support from healthcare providers can ease these challenges, as can maintaining social connections—something Vormoor reflected on from his training in the late 1980s, contrasting it with today’s practices, which allow for more social interaction.

Conclusion

AYAs with hematological diseases can feel isolated, but a focus on better communication and support can make a world of difference. Efforts to improve understanding and resources will not only refine patient care but also help young individuals navigate their complex emotional and social landscapes.

For further reading on the support and needs of AYA cancer patients, refer to JCO Oncology Practice for insights on educational gaps in sexual health.

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sexual health,mental health,adolescent young adult,cancer survivorship