Discussing Sexuality, Mental Health With AYA Patients Amid the Hematological Treatment Journey

Adolescent and young adult (AYA) patients have a distinct set of needs, but a common definition of the term is lacking among hematologists, and the resources and familiarity to frankly discuss topics like sexuality and mental health are even less uniform, according to clinicians and patients who spoke at a session of the 2025 European Hematology Association (EHA) Congress. The session covered findings from an EHA AYA Taskforce Survey, best practices in addressing the unique concerns of AYAs, and input from patients based on their lived experience.

AYA patients with hematological diseases have unique needs that require a multidisciplinary strategy to ensure their mental and sexual well-being during and beyond treatment. | Image Credit: © Seventyfour - stock.adobe.com

Lack of Common Definition, Resources for AYA Patients

Anna Castleton, MBBS, PhD, of Christie Hospital Manchester and cochair of the EHA AYA Taskforce, presented findings of a survey administered to 1490 health care professionals across Europe that aimed to scope the state of AYA services in the field of hematology. Nearly half (49.7%) were unaware of an AYA definition in their country, indicating the heterogeneity in specifying the age range of AYAs, but having such a definition was associated with access to and perceived quality of age-relevant services such as psychological support, fertility services, and clinical nurse specialist availability.

“If you as an institution can link up with third-sector organizations that are advocating for AYAs, that increases your chances of providing the right services and making sure that they are of sufficient quality,” Castleton added. The benefits of these partnerships with charities were a positive finding of the survey, but the taskforce also found disparities in services across nations, uneven resources for those with nonmalignant disease as opposed to cancer, and the scarcity of transitional care services. Castleton and the other members of the task force hope that these findings will help “inform the generation of an AYA-specific strategy” to be shared across EHA.

Patient Perspective on Do’s and Don’ts

Given the importance of understanding the patient perspective, especially during the developmentally sensitive AYA period, the session featured examples from a patient, Yunus Borowczak of the CML Advocates Network, who shared what was helpful during his diagnosis with chronic myeloid leukemia (CML) when he was around 12 years old. His doctor spoke with empathy and respect, saying “I promise you I’ll always be honest with you about your condition and your options,” which Borowczak came to find was unfortunately the exception rather than the rule. Common pitfalls for clinicians delivering hematological diagnoses to AYA patients include sugarcoating the news, overusing medical jargon, or speaking only to the parents and not the actual patient.

Borowczak also discussed the importance of breaking the taboos around medical and sexual health, which need to be treated sensitively and seriously without dismissing a young patient’s concerns as “something to worry about later.”

“I do not stand alone in asking for eye-level and open communication regarding sexual health,” Borowczak said, pointing to recent findings on the scarcity of education on these topics during hematology/oncology training.1 He closed by reminding the audience that “the goal is not to treat a diagnosis. The goal is to connect with a human being.”

Putting Sexual Health Into Practice for AYA Patients

Doctors often don’t think about the impact of cancer diagnosis and treatment on interpersonal relationships, according to the next speaker, Adam DuVall, MD, MPH, of the University of Chicago. However, this needs to change, because AYA patients are uniquely vulnerable to the developmental disruption caused by having cancer at this formative age, and rates of sexual dysfunction are unacceptably high among this patient subset.

To help address the underresearched problem of sexual dysfunction among female cancer survivors, DuVall and colleagues are leveraging a sexual education resource to help these women connect with their bodies and sexualities.2 Preliminary results reveal improvements in sexual distress, body image, and physical functioning, but DuVall said the next step is to develop cancer-specific and AYA-specific modules.

Inspired by a quote from prior research about letting conversations about sexuality ride in the backseat of treatment instead of driving the car,3 DuVall said, “We want to be able to talk about it and address it and help our patients through the process, so that they can, hopefully, when we’re done and cure them of their cancer, go on to live normal lives and have that positive relationship and great sex life for the rest of their life.”

Looking Ahead to Inclusive Treatment Strategies

The speakers joined session chair Josef Vormoor, MD, of Utrecht University in the Netherlands, and patient advocate Charles McGrath for a discussion of the ample room for improvement in communicating with young patients with hematological diseases. Castleton acknowledged that the EHA survey didn’t delve deeply into sexual health, which may indicate that patient advocates are not being involved in survey design at an early stage.

In response to an audience question about how to involve partners in the treatment journey, McGrath noted that romantic relationships are often casualties of cancer treatment, so having better support from hematologists and multidisciplinary teams could help alleviate the stress on partners and patients. Audience members also asked about how to balance young people’s social lives with fears of infection during treatment.

“I remember when I trained in Germany in the late 1980s that we would isolate the patients completely and they wouldn’t be allowed to use public transport,” Vormoor recalled, “and then I came to Newcastle and I sent my patients to the football match.” The panelists agreed that the key is finding a balance between connection and safety. Support groups and virtual solutions can help aid in the goal of ensuring young patients can live a life as normal as possible while receiving treatment, which was agreed on as a priority by both the clinicians and the patients.

References

1. Reese JB, Bauman JR, Sorice KA, Frederick N, Bober SL. Hematology and oncology fellow education about sexual and reproductive health: a survey of program directors in the United States. JCO Oncol Pract. 2024;20(6):852-860. doi:10.1200/OP.23.00499

2. Bates L. A frank, educational, instructional website about female sexuality? OMGYes! The Guardian. March 5, 2016. Accessed June 14, 2025. https://www.theguardian.com/lifeandstyle/womens-blog/2016/mar/05/a-frank-educational-instructional-website-about-female-sexuality-omgyes

3. Moules NJ, Estefan A, Laing CM, et al. “A tribe apart”: sexuality and cancer in adolescence. J Pediatr Oncol Nurs. 2017;34(4):295-308. doi:10.1177/1043454217697669