Adolescents and young adults with cancer care in Asia: The joint ESMO/SIOPE/SIOP ASIA survey

Abstract

Background: Adolescents and young adults (AYA) with cancer require dedicated management that encompasses both adult and paediatric cancer services. Following the European survey, the European Society for Medical Oncology (ESMO), the European Society for Paediatric Oncology (SIOPE) and the Asian Society for Paediatric Oncology (SIOP-ASIA) ran a tailored one to identify availability, access and disparities in AYA cancer care across Asia. Methods: A link to an online survey was sent to healthcare professionals (HCPs) in Asia interested in AYA cancer care. Questions covered the demographics and training of HCPs, definition of AYA, availability and access to AYA-specialised centres, trends, habits, disparities and challenges encountered in the management of cancer in AYA. Results: In total, 268 responses were received from 22 Asian countries. Among respondents, 22% reported being trained to treat both adults and children. There was a striking variation in the definition of AYA (median lower age 15 years, median higher age 29 years). The majority of the respondents did not have access to specialised cancer services (78%) and were not aware of any research initiatives or clinical trials for AYA (73%). Over two-thirds were able to refer their patients for psychological (69%) and/or nutrition support (69%); however, more than half did not have access to a social worker (60%), education mentor (55%), or age-specific nurse specialist (63%). Most advised their patients on a healthy lifestyle after cancer treatment; nevertheless, 46% did not ask their patients regarding smokeless tobacco habits and only 49% referred smokers to a smoking cessation service. Furthermore, 29% did not promote HPV vaccination for girls and 17% did not promote HBV vaccination for high-risk individuals. In terms of funding, 69% reported governmental insurance coverage, albeit 65% reported also at least partially self-paid. Almost half reported treatment non-compliance or abandonment (47%), attributed to financial and family problems (72%), loss to follow-up (74%) and seeking alternative treatments (77%). Conclusions: Lack of access to and suboptimal delivery of AYA-specialised cancer care services pose major challenges across Asia.