Adolescent and Young Adult (AYA) patients face an array of unique challenges during their journey with hematological diseases. At the recent 2025 European Hematology Association (EHA) Congress, clinicians and patients engaged in a meaningful dialogue about addressing important topics that often go unspoken: sexuality and mental health. Despite a common understanding that AYA patients have distinct needs during treatment, a unified definition of this demographic remains elusive, highlighting disparities in resources and practices across countries.
During the congress, Anna Castleton, MBBS, PhD, from Christie Hospital Manchester and cochair of the EHA AYA Taskforce, presented critical findings from a survey targeting healthcare professionals across Europe. With nearly half of the 1,490 respondents unaware of a standardized AYA definition in their respective countries, the variations in defining this group have significant implications for the quality of age-relevant services. These include crucial psychological support, fertility services, and specialist nursing availability. Castleton emphasized the importance of partnerships with third-sector organizations to enhance service delivery, stating that collaboration increases the likelihood of providing appropriate support and resources for AYA patients.
The taskforce also identified disparities in services available for AYA patients, particularly between those with cancer and those with nonmalignant diseases. One of the most notable gaps highlighted was in transitional care services, essential for ensuring a smooth transition from pediatric to adult healthcare. Castleton and her colleagues aspire to use these insights to cultivate an AYA-specific strategy, fostering greater awareness and improvement across the field of hematology.
The AYA experience during treatment is deeply influenced by mental health and relationships, a truth poignantly articulated by patient advocate Yunus Borowczak of the CML Advocates Network. Diagnosed with chronic myeloid leukemia (CML) at 12, Borowczak shared his journey and emphasized the importance of communication. “I promise you I’ll always be honest with you about your condition and your options,” his doctor assured him, a statement he noted remained a rarity. Borowczak pointed out common missteps by healthcare providers: sugarcoating bad news, using excessive medical jargon, or failing to address the patient directly. He passionately called for breaking down the stigma surrounding discussions of medical and sexual health, underscoring that young patients deserve open, honest dialogues about their concerns—not dismissive attitudes that categorize these topics as secondary.
Dr. Adam DuVall from the University of Chicago elaborated further on this essential dialogue. He noted that many healthcare providers overlook the significant impact of a cancer diagnosis on interpersonal relationships, especially during a critical developmental period for AYA patients. These patients face high rates of sexual dysfunction, a problem often underreported and under-researched. By utilizing resources specifically tailored for AYA women, DuVall aims to bridge the gap in sexual health education. Early results indicate that such initiatives yield improvements in areas like sexual distress and body image. Moving forward, the challenge will be developing more cancer-specific modules to cater to the needs of AYA patients.
The conversation turned to the vital question of how to incorporate sexual health into the continuum of care for AYA patients. DuVall articulated the necessity of addressing these topics as a holistic part of treatment, emphasizing the importance of supporting young patients in reclaiming their personal and sexual lives post-treatment. He argued against allowing conversations about sexuality to “ride in the backseat” of cancer treatment.
The session concluded with insights from session chair Dr. Josef Vormoor of Utrecht University and patient advocate Charles McGrath. They discussed the substantial room for improvement in engaging young patients and their support systems in the treatment process. Vormoor reflected on the evolution of treatment philosophies, contrasting the previous isolationist approach to patient care with contemporary practices encouraging social interaction, provided it can be managed safely.
The pivotal takeaway from these discussions is the importance of fostering inclusive and comprehensive care strategies that address the multifaceted needs of AYA patients coping with hematological conditions. While exploring their sexual health and mental well-being is paramount, it is equally critical to integrate support systems for both patients and their partners.
AYAs navigating the complexities of cancer deserve healthcare models that prioritize open communication and understanding, enabling them to lead as normal a life as possible despite their diagnosis. Efforts should continually seek to refine the approach to care through collaboration, empathy, and innovative solutions that adapt to the evolving landscape of hematological treatment.
In conclusion, it is evident that meaningful improvements can be made in the lives of AYA patients through recognition, empathy, and open dialogue. By valuing the patient perspective and prioritizing the unique needs of this group, healthcare providers can foster an environment that advances both the physical and emotional well-being of young individuals facing the challenging journey of hematological treatment.
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