Gaps still exist in care and communication for AYA, with failure to address their unique needs
While it is increasingly acknowledged that adolescents and young adults (AYA) with cancer deal with their age-specific issues, such as gaining independence from parents, forming an identity, completing their education, starting a career and having a family during treatments, there are currently no validated and clinically proven tools dedicated to capturing the expectations and specific needs of this unique population (J Cancer Surviv. 2024;20:683–703; Clin Breast Cancer. 2026;26:200–207.e4; Front Psychol. 2025;16:1669872). Earlier this year, a dedicated ESMO task force was convened, with the aim to raise awareness and foster collaboration across disciplines, supporting research initiatives and advocating for more structured, age-appropriate care models. One of the initial tasks will be to generate a practical, clinically applicable digital tool to assist clinicians with the assessment of AYA patients from initial diagnosis through treatment. The tool will cover areas such as reproductive and sexual health, genetic counselling, early and late toxicities, psychological and psychosocial support, education, employment, financial guidance and special needs in vulnerable populations.
The digital environment offers novel opportunities to complement routine follow-up, especially in a younger population with distinct concerns, and structured, patient-tailored digital tools should be integrated within broader survivorship strategies, with future work needed to confirm durability and feasibility in real-world settings. Data presented at the ESMO Breast Cancer 2026 congress (Berlin, 6–8 May) from a secondary analysis of a multicentre, randomised controlled trial of the web- and app-based digital mHealth intervention Young, Empowered and Strong (YES), clearly exemplifies the informational support provided by a digital-based intervention (LBA5). YES provides tailored education, resources and support for AYA survivors of breast cancer based on monthly electronic patient-reported outcome monitoring, a journal platform and a chat room (BMC Public Health. 2025;25:126). Primary results of the study previously demonstrated that the YES intervention improved quality of life and reduced disease-specific symptoms compared with usual care (UC) (Clin Cancer Res. 2026;32(4_Suppl):GS3-03). Secondary analysis data address the issue of persistent informational needs – a clinically relevant yet often overlooked aspect of breast cancer survivorship in AYA. In the 360 patients aged ≤39 years with stage 0–III breast cancer (<3 years post-treatment), a significantly greater decline in informational needs was found in participants randomised to YES compared with UC at 9 months versus baseline. For example, 78% of the YES arm had decreased odds of need for information on long-term effects of cancer treatment compared with 35% of the UC arm; decreased odds of need for information on recurrence risk was 79% versus 34%; and for information on body image was 67% versus 36%, respectively. The magnitude of benefit observed with the mHealth intervention suggests a meaningful added value beyond standard care.
Previous research reported that the most commonly identified informational needs among AYA were family and children, fertility and pregnancy, work and reintegration, connection with peers with cancer, and intimacy and sexuality (J Cancer Surviv. 2024;20:683–703). However, accessing timely and comprehensive age-appropriate information regarding the long-term consequences of their cancer and its treatment remains a challenge (J Cancer Surviv. 2024;20:683–703). Other frequently reported gaps in age-appropriate communication include limited access to peer support networks, inadequate psychosocial services and insufficient guidance on survivorship issues (Cancer Treat Rev. 2025;139:102992).
While progress has been made in recent years, the reality is that access to age-specific care for AYA with cancer remains inconsistent and suboptimal, in both Western (ESMO Open. 2025;10:105829) and Asian countries (Int J Clin Oncol. 2022;27:7–15). Observations highlight a lack of coordinated multidisciplinary care addressing both medical and lifestyle concerns. In this scenario digital resources are becoming increasingly important although they may vary in quality and accessibility. Continued international collaboration, investment in dedicated AYA programmes, and inclusion of young patients’ perspectives in the design of care programmes will be critical to reducing disparities and building a model of care that truly reflects the needs of this population.
Programme details
Rosenberg SM, et al. Efficacy of an mHealth intervention to address informational needs in adolescent and young adult (AYA) breast cancer survivors (BCS): A secondary outcome from the YES trial. ESMO Breast Cancer 2026 - LBA5