Adolescent and young adult patients (AYA) have a distinct set of needs, but a common definition of the term is lacking among hematologists, and resources and familiarity to discuss subjects like sexuality and mental health are even less uniform, according to clinicians and patients who spoke during a session of the session of the session of the session of the session Session of the session of the session of the session of the session of the session of the session of the session of the session of the session of the session of the session of the session of the session of the session of the session of the session of the session of the session of the session of the session of the session of the session of the session of the session of the session of the session of the session of the session of the session of the session 2025 Congress of the European Hematology Association (EHA). The session covered the results of an EHA Aya Taskforce survey, the best practices to respond to the unique concerns of the Ayas and the contributions of patients according to their lived experience.
Patients with AYA 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: © SEVITE -FOUR – STOCK.ADOBE.COM
Lack of common definition, resources for AYA patients
Anna Castleton, MBBS, PHD, of Christie Hospital Manchester and Cochair of EHA Aya Taskforce, presented the results of a survey administered to 1490 health professionals across Europe which aimed to develop the state of AYA services in the field of hematology. Almost half (49.7%) were not aware of a definition of the AYA in their country, indicating heterogeneity in the specification of the Ayas age group, but having such a definition was associated with the access and perceived quality of the relevant age services such as psychological support, fertility services and the clinical availability of special nurses.
“If you, as an institution, can connect with third sector organizations that argue for Ayas, this increases your chances of providing the right services and ensuring that they are of sufficient quality,” added Castleton. The advantages of these partnerships with charitable organizations were a positive conclusion of the survey, but the working group also found disparities in services in countries, unequal resources for people with non -malignant diseases as opposed to cancer and the scarcity of transitional care services. Castleton and the other members of the working group hope that these conclusions will help “inform the generation of a specific AYA strategy” to be shared through the EHA.
Patient’s perspective on the do and not to do
Given the importance of understanding the patient’s perspective, in particular during the AYA period sensitive to development, the session presented examples of a patient, Yunus Borowczak of the CML Advocates Network, which shared what was useful during his diagnosis with chronic myeloid leukemia (LMC) at the age of 12 years. His doctor spoke with empathy and respect, saying: “I promise you, I will always be honest with you of your state and your options”, that Borowczak came to find was unfortunately the exception rather than the rule. Current traps for clinicians who provide hematological diagnostics to AYA patients include sugar sugar, overuse of medical jargon or speaking only to parents and not to the patient.
Borowczak also discussed the importance of breaking taboos around medical and sexual health, which must be treated with sensitivity and seriously without rejecting the concerns of a young patient as “something to fear later”.
“I am not alone in asking for a communication at the height of the eyes and open concerning sexual health,” said Borowczak, pointing to Recent results on the scarcity of education On these subjects during the formation of hematology / oncology.1 He closed by reminding the public that “the objective is not to deal with a diagnosis. The goal is to connect with a human being ”.
Put sexual health in practice for AYA patients
Doctors often do not think of the impact of the diagnosis and treatment of cancer on interpersonal relations, according to the next speaker, Adam Duvall, MD, MPH, of the University of Chicago. However, this must change, as AYA patients are particularly vulnerable to the disruption of development caused by cancer at this formative age, and sexual dysfunction rates are unacceptably raised among this subset of the patient.
To help solve the sub-research problem of sexual dysfunction in women surviving cancer, Duvall and his colleagues take advantage of A sex education resource To help these women connect with their bodies and sexuality.2 The preliminary results reveal improvements in sexual distress, body image and physical functioning, but Duvall has said that the next step is to develop specific cancer and AYA modules.
Inspired by a Quote from previous research About let conversations on sexuality roll at the back of the treatment instead of driving the car,3 Duvall said: “We want to be able to talk about it and tackle it and help our patients through the process, so that they can hope, when we have finished and cure them from their cancer, continue to live a normal life and have this positive relationship and a great sex life for the rest of their lives.”
In inclusive treatment strategies
The speakers joined the president of session Josef Vormoor, MD, of the University of Utrecht in the Netherlands, and the defender of patients Charles McGrath for a discussion on the large room to improve communication with young patients with hematological diseases. Castleton acknowledged that the EHA survey has not been deep in sexual health, which may indicate that patient defenders are not involved in the design of the investigation at an early stage.
In response to a question of audience on how to involve partners in the treatment course, McGrath noted that romantic relationships are often victims of cancer treatment, so having better support from hematologists and multidisciplinary teams could help to mitigate stress on partners and patients. Public members also asked how to balance the social life of young people with fears of infection during treatment.
“I remember that when I trained in Germany in the late 1980s, we completely isolated patients and they would not be allowed to use public transport,” recalls Vormoor, “then I came to Newcastle and I sent my patients to the football match.” Panelists have agreed that the key is to find a balance between connection and security. Support groups and virtual solutions can help help guarantee that young patients can live as normal as possible while receiving treatment, which has been agreed as priority by clinicians and patients.
References
1. Reese JB, Bauman Jr, Sorice Ka, Frederick N, Bober SL. Hematology and oncology Fellow Education on sexual and reproductive health: a survey of program directors in the United States. Jco oncol prag. 2024; 20 (6): 852-860. DOI: 10.1200 / OP.23.00499
2. Bates L. A frank, educational and educational website on female sexuality? Omgyes! The guardian. March 5, 2016. Accessed June 14, 2025. https://www.theguardian.com/lifeandstyle/womens-log/2016/mar/05/a-frank-educational-insrucheal-website-about-female-sexuality-omgyes
3. NJ mussels, estefan a, laing cm, et al. “A tribe apart”: sexuality and cancer in adolescence. J Pediatr oncol Nurse. 2017; 34 (4): 295-308. DOI: 10.1177 / 10434542176976969