Going beyond protocol is key for young people with cancer

Cancer in young people remains, regrettably, an under-recognised challenge. While the past two to three decades have brought meaningful advances in the care of this vulnerable population, adolescents and young adults (AYA) aged 15 to 39 years continue to face distinct obstacles. We now understand that the cancer burden in AYA varies considerably by age, sex and socioeconomic status (ESMO Open. 2021;6:100255). We are also witnessing a shift in the profile of tumours diagnosed in this age group. While lymphomas, germ cell tumours and sarcomas continue to predominate, certain solid-organ malignancies – including colorectal, breast and nasopharyngeal cancers – are becoming increasingly common. Globally, the incidence of early-onset cancer has risen by nearly 80% since the 1990s (BMJ Oncology. 2023;2:e000049), making this an urgent and growing concern.

While the greatest strides in AYA oncology have been made in Western nations, the Asia Pacific region has been slower to respond – despite AYA representing a substantial proportion of its population (J Adolesc Young Adult Oncol. 2024;13:1–7). The burden of AYA cancers falls disproportionately on countries with low and low-middle sociodemographic indices; South Asia and East Asia now carry the highest cancer burden globally (ESMO Open. 2021;6:100255). This disparity demands our attention and action.

It is imperative that we develop best practices for AYA cancer care that are tailored to the Asian context. This does not mean reinventing the wheel – rather, we can learn from existing evidence from other regions while recognising the nuances that are crucial to effective diagnosis and treatment in our setting. Cultural differences between East and West, for instance around the societal importance of family and childbearing, profoundly influence how individuals perceive their illness and what they most want from treatment. Guidelines specific to Asia must also be tiered to acknowledge the wide intra-regional disparities in socioeconomic status, particularly between rural and urban populations. Alignment with national Ministry of Health priorities is essential to ensure governmental endorsement and implementation of these guidelines.

Beyond treatment protocols, we must learn to individualise management for each young person. A critical area is survivorship support, particularly in addressing financial toxicity. Given their life stage, these individuals should have decades of productive working life ahead of them. Yet even after successful treatment, many struggle at work, experiencing reduced work performance, increased absenteeism and a precarious financial situation compared to their peers (J Adolesc Young Adult Oncol. 2023;12:416–424). Systematic reviews have shown that AYA survivors are more likely to be unemployed, have lower incomes and require social security supplementation (Crit Rev Oncol Hematol. 2023;183:103920). These financial hardships are compounded by the out-of-pocket medical expenses incurred during treatment.

An essential component of supporting our young patients lies in providing targeted emotional support and age-appropriate information. With a few notable exceptions – such as Japan's AYA Oncology Alliance (AYA Ken), which has led the region in advocacy, education and research – Asia has few dedicated resources for young patients. To help address this gap, we established the Adolescent and Young Adult Oncology (AYAO) support group at the National Cancer Centre Singapore in collaboration with the Singapore Cancer Society. This initiative creates a safe space for patients and survivors to connect – whether in person, via messaging or by phone. It also hosts webinars that give patients access to the voices of young adults with first-hand experience of the challenges they are facing. Additionally, we are piloting an algorithm-driven mobile application designed to help even the busiest clinics quickly and easily provide tailored information to patients.

More services and resources, developed by specialised centres and made widely available, should help to improve both the disease trajectory and the survivorship journey of AYA with cancer in Asia and elsewhere. The time has come to move beyond protocol-driven care and embrace a more holistic, individualised approach – one that recognises the unique medical, psychosocial and developmental needs of young people with cancer. Only by doing so can we truly optimise outcomes and quality of life for this deserving population.