A Trama, L Licitra, C Bergamini, M Gil Sanjines, S Bonfarnuzzo, E Orlandi, B Vischioni, M Tagliabue, R De Berardinis, M Ansarin, V Manciocco, F Nardozza, G Mercante, A Mirabile, G Mari, F Gaino, P de Franco, E Cavalera, V Gregorc, V Valentini, P Bonomo, M Ferrari, L D Locati, J Galli, L Sacchetto, S Cavalieri, L Botta
This registry-based analysis reveals substantial variability in treatment strategies and frequent treatment delays for rare HNCs, even within expert centres. Improving referral coordination, adherence to guidelines, and timely initiation of treatment remain critical. The EURACAN registry represents a valuable tool for benchmarking and enhancing care quality, supporting evidence-informed treatment decisions for these rare and complex cancers.
BACKGROUND: Rare head and neck cancers (HNCs), including sinonasal cancers (SNC), nasopharyngeal cancers (NPC), and salivary gland cancers (SGC), are biologically diverse and infrequent, resulting in limited high-quality evidence to guide clinical management. This study evaluated real-world patterns and quality of care in Italy for these rare HNCs within the European Reference Network for Rare Adult Solid Cancers (EURACAN) registry.
PATIENTS AND METHODS: Data from 795 adult patients diagnosed or managed at Italian expert centres between 2018 and 2024 with rare HNCs (152 SNC, 201 NPC, and 442 SGC) were analysed. Key indicators assessed included diagnostic completeness, adherence to European clinical practice guidelines, and timeliness of treatment. Analyses were stratified by tumour type and care setting.
RESULTS: Most patients presented with locally advanced disease (70% SNC, 74% NPC, and 50% SGC). Epstein-Barr virus testing was carried out in 80% of NPC cases. Treatment approaches were heterogeneous, especially for SNC, where multimodal therapy varied widely. Guidelines deviations were common: ∼50% of patients with localised SGC and 67% of those with localised NPC did not receive guideline-recommended treatments. Treatment delays were frequent, with 48%-77% of patients failing to initiate treatment within recommended timeframes. These delays were predominantly associated with interhospital referral pathways and were more pronounced in patients requiring multimodal treatments.
CONCLUSIONS: This registry-based analysis reveals substantial variability in treatment strategies and frequent treatment delays for rare HNCs, even within expert centres. Improving referral coordination, adherence to guidelines, and timely initiation of treatment remain critical. The EURACAN registry represents a valuable tool for benchmarking and enhancing care quality, supporting evidence-informed treatment decisions for these rare and complex cancers.