Endocrine Abstracts

We report the results of the first Europe-wide survey of patients with multiple endocrine neoplasia (MEN) disorders by the European MEN Alliance (EMENA). METHOD: An online questionnaire was distributed via patient groups, social media and health professionals. A total of 284 responses were analysed. RESULTS: 35% (n=99) UK responses and 65% (n=185) from 17 other EU countries: 68% female, 32% male (UK; 75% and 25%). Disorders represented were: MEN1 n=201 (UK n=72), MEN2A n=66 (UK n=22), MEN2B n=16 (UK n=5), MEN4 n=1 (UK n=0). Overall, MEN patient care was provided mainly by Endocrinologists (UK 82%; other EU 79%) in specialist referral centres (UK 53%; other EU 74%) with access to a specialist multidisciplinary team (UK 71%; other EU 69%). Appointment frequencies were similar; most commonly 6 monthly (UK 38%; other EU 43%) or annually (UK 44%; other EU 37%). Appointment length was perceived to be appropriate by the majority of respondents, although only 32% of patients in other EU countries had access to a specialist nurse compared to 57% in the UK. The typical intervals between surveillance biochemical testing were similar between the UK and rest of the EU, respectively (3 monthly (17%, 18%), 6 monthly (30%, 39%), annually (48%, 37%), over 12 months (1%, 4.5%) and none (4%, 1.5%)) as were those for radiological surveillance (3 monthly (6%, 5%), 6 monthly (14%, 20%), annually (44%, 41%), over 12 months (25%, 23%)). CONCLUSION: Although perceptions regarding the provision of care are generally similar between the UK and rest of Europe, differences in access to specialist referral centres and to specialist endocrine nurses are reported by patients with multiple endocrine neoplasia in the UK compared to other European countries.