Endocrine Abstracts

We report the results of the first Europe-wide survey of the Quality of Care 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) of responses were from UK patients 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). Patients felt overwhelmingly that their specialist listened to their concerns (UK 82%; other EU 80%), involved them in decision-making (UK 77%; other EU 80%), were knowledgeable about MEN and MEN care and monitoring (UK 82%; other EU 85%), and were trustworthy (UK 82%; other EU 85%). Nevertheless, these positive results were not strongly reflected in the patients’ ratings of their overall care for MEN with only 34% and 25% of patients rating their care as excellent in the UK and other EU countries, respectively. There were additional variations in all patient responses when the type of MEN was taken into consideration including more UK MEN2A patients rating their overall care as excellent compared to MEN1 and MEN2B (59%, 26%, 40% respectively).

Conclusion: Despite very positive patient perceptions across many aspects of clinical provision, overall ratings of care are somewhat surprising by comparison. Nevertheless, this comparison shows that patients in the UK and other EU countries consider the quality of their care to be of a good standard.