Tumori · 2026
Knowledge and resources gaps for adolescent and young adult (AYA) cancer patients: Results from survAYA, an Italian National Survey.
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Puccini Alberto, Farinatti Sara, Bertuzzi Alexia Francesca, Baldi Giacomo Giulio, Indini Alice, Quarello Paola, Pagani Bagliacca Elena, Mascarin Maurizio, Maruzzo Marco, Lambertini Matteo, Incorvaia Lorena, Milano Giuseppe Maria, Zucchetti Giulia, Tornesello Assunta, Spinelli Marco, Razzaboni Elisabetta, Perillo Teresa, Marziali Laura, Ferrari Andrea, Peccatori Fedro Alessandro, Toss Angela
Аннотация
PURPOSE: Adolescents and young adults (AYA; 15-39 years) represent a distinct oncology population with specific biological and psychosocial needs. Despite growing awareness, AYA patients often face fragmented care between pediatric and adult settings, resulting in diagnostic delays, limited clinical trial access, and inadequate psychosocial support. In 2021, the AIOM-AIEOP AYA Working Group was established in Italy to promote awareness and address these challenges.
METHODS: An anonymous, voluntary online survey was designed by the AIOM-AIEOP AYA Working Group and distributed during the AIOM National Congress (November 2024). Using iPads at a dedicated booth, oncologists and other healthcare professionals completed a questionnaire exploring knowledge, perceptions, and access to AYA-focused services. Data were analyzed using descriptive statistics.
RESULTS: Ninety-seven professionals participated (median age 34 years; 75% female; 56% medical oncologists). Although 86% reported access to genetic counseling and 84% to fertility preservation services, only 18% had AYA-dedicated spaces and 21% employed trained AYA-specific staff. Forty-four percent felt competent in assessing hereditary cancer syndromes, and fewer than 25% were aware of AYA-focused research or trials. Psychological support was commonly available, whereas educational coaching and peer support groups were rare (5% each). Lifestyle counseling was frequent, but structured survivorship care and long-term follow-up were limited.
CONCLUSIONS: This survey reveals substantial gaps in AYA oncology services in Italy, particularly regarding dedicated staff, infrastructure, and training. National coordination and implementation of standardized frameworks, such as through the AIOM-AIEOP network, are essential to ensure equitable, comprehensive care for AYA patients.
METHODS: An anonymous, voluntary online survey was designed by the AIOM-AIEOP AYA Working Group and distributed during the AIOM National Congress (November 2024). Using iPads at a dedicated booth, oncologists and other healthcare professionals completed a questionnaire exploring knowledge, perceptions, and access to AYA-focused services. Data were analyzed using descriptive statistics.
RESULTS: Ninety-seven professionals participated (median age 34 years; 75% female; 56% medical oncologists). Although 86% reported access to genetic counseling and 84% to fertility preservation services, only 18% had AYA-dedicated spaces and 21% employed trained AYA-specific staff. Forty-four percent felt competent in assessing hereditary cancer syndromes, and fewer than 25% were aware of AYA-focused research or trials. Psychological support was commonly available, whereas educational coaching and peer support groups were rare (5% each). Lifestyle counseling was frequent, but structured survivorship care and long-term follow-up were limited.
CONCLUSIONS: This survey reveals substantial gaps in AYA oncology services in Italy, particularly regarding dedicated staff, infrastructure, and training. National coordination and implementation of standardized frameworks, such as through the AIOM-AIEOP network, are essential to ensure equitable, comprehensive care for AYA patients.