From First Symptoms to Multidisciplinary Care: Results of a patient-centred European Survey on Multiple Endocrine Neoplasia

Multiple Endocrine Neoplasia (MEN) syndromes are rare hereditary endocrine disorders with multisystem tumour burden, complex surveillance requirements, and significant psychosocial impact. Patient-centred data on diagnostic experiences and on information-provision quality remain limited. The online survey of 133 European MEN patients was administered from 10.11.2023 to 01.09.2025. Participants reported diagnostic journeys, information adequacy, specialist knowledge, care structure, current health status, and their research and care priorities utilizing mainly Likert scales and multiple-choice formats. Statistical analysis included descriptive statistics. Time from first symptom to diagnosis exceeded twelve months in 48.9% and five years in 26.3% with 50.0% of respondents reporting straightforward referral. Only 42.1% rated disease information and 48.1% their physician's MEN knowledge as good/excellent, prompting reliance on non-clinical channels like advocacy groups (72.2%). Centres of Expertise (CoE) involvement was most frequent in patients with 1-5 years diagnostic delay (53.3%) while Multidisciplinary Team (MDT) care was most frequent in patients with incidental diagnosis (64.0%). Of the respondents with incidental diagnosis, 28.0% reported their physical health as "bad" compared to 57.1% in patients experiencing a delay exceeding five years. Unmet needs are according to patients diagnosed incidentally or within 0-12 months "Knowledge & Information," whereas patients experiencing diagnostic delays exceeding five years prioritized "Research & Cure" and "Early Diagnosis".This survey reveals substantial unmet needs in diagnostic timing, information provision, specialist knowledge and access to specialized care. Interventions including enhanced primary care education, standardized patient information materials, CoE expansion, and mandatory MDT involvement could improve diagnostic delay and treatment quality.