Overall, providers feel comfortable discussing these topics; but training is inconsistent.

Most providers reported feeling comfortable discussing the critical issues that shape the AYA cancer experience, particularly those directly tied to treatment. Side effects (84%), palliative care (78%), and shared decision-making (72%) were the areas of strongest familiarity. These findings suggest that providers are generally confident in addressing the immediate and clinical aspects of care. However, confidence does not always reflect formal preparation. Training on these issues varied widely, and when it came to mental health—a top concern for AYAs—only half of providers rated their training as sufficient or expert-level, while 10% reported no training at all.

This inconsistency highlights a systemic gap: while providers may be addressing these conversations, the lack of structured, comprehensive training means they may not be equipped to do so effectively. Without standardized education, providers are left to rely on personal experience or institutional resources, which can vary significantly across care settings.

Both providers and patients expressed dissatisfaction with the availability of AYA resources.

A major finding across both provider and patient responses was dissatisfaction with the availability of dedicated AYA resources. Only 31% of providers reported having a dedicated AYA program or staff at their institution—widely regarded as the gold standard of care. Another 27% offered general cancer resources with some AYA-specific content, while 31% acknowledged they had insufficient or no age-specific resources to provide. Focus groups underscored that patients treated at smaller community hospitals often faced even greater barriers to supportive care, particularly in accessing mental health services, compared to those at larger academic institutions.

Patients echoed these concerns, with 62% reporting that they were not given resources or connected to support groups during their care. Those who did receive resources often had to ask for them, and typically were directed to outside nonprofits or specific support programs, rather than being connected to institutional offerings. One patient summarized this frustration, saying, “I wish resources would have been provided from the beginning rather than me having to ask.”

The patient-facing survey revealed significant discrepancies from provider reports, with large gaps even in areas where providers rated themselves highly familiar.

A major theme across the findings was the disconnect between what providers said they discussed and what patients remembered or found meaningful. Providers largely reported addressing key issues such as fertility preservation, mental health, and community resources at diagnosis, but patients overwhelmingly indicated that these conversations either did not happen or left them dissatisfied. For instance, 89% of patients said end-of-life care and parenting with cancer were never discussed, while large majorities also pointed to gaps around survivor’s guilt, dating and sex, and palliative care.

This discrepancy persisted even in areas where providers rated themselves most familiar and comfortable. While 84% of providers reported confidence in discussing side effects, only 51% of patients were satisfied with how those side effects were explained. Similarly, although 70% of providers said they addressed fertility preservation at diagnosis, only 19% of patients reported being very satisfied with the information they received, and 16% said the topic was never raised at all. These findings suggest that provider comfort does not necessarily translate into patient understanding or satisfaction, and that timing, clarity, and reinforcement of information are critical to bridging this gap.

Mental health is one of the top concerns reported by AYA survivors.

Mental health emerged as a particularly urgent issue in both provider and patient findings. Half of providers acknowledged their training in this area was insufficient, and 10% reported receiving no training at all—despite the fact that they often indicated discussing mental health at diagnosis. From the patient perspective, dissatisfaction was even clearer: mental health consistently ranks as one of the most pressing concerns for AYA survivors, yet many reported limited or unsatisfactory conversations with their providers and few available resources. Without stronger provider training and institutional support, mental health needs are likely to remain unmet, leaving AYA patients especially vulnerable during and after treatment.