Endocrine Abstracts

The German Network for Pituitary and Adrenal Disorders (Netzwerk Hypophysen- und Nebennierenerkrankungen e.V.) conducted a nationwide survey on unmet needs of patients with multiple endocrine neoplasia (MEN) in Germany. The study aimed to identify unmet needs in patient care and quality of life, as well as potential areas for improvement.

Methods: The survey was based on a questionnaire developed by the European MEN Alliance (EMENA) and was distributed by the German Patients’ Advocacy Group using the European Commission’s EU Survey platform among group members, physicians, and social media. A total of 73 responses were analysed.

Results: Of the responses analysed, 23% (n=17) were from patients or their parents and carers aged 39 years or younger, and 77% (n=56) were from those aged 40 years or older, of whom 34% were male. 54 cases of MEN1, 10 cases of MEN2A, 6 cases of MEN2B, and 3 cases of MEN4 were included. Just under 50% of all cases were managed by a multidisciplinary team and were not aware of reference centres. The time to diagnosis is rated as too long (30%), psychological help is missing (40%). Approximately one-third of the participants indicate their GP’s knowledge of their disease as poor. More than half of the participants rate the communication among the physicians as suboptimal. The involvement of endocrine nurses is not well recognized and is unknown to many (57%). Unmet needs according to patients include biomarkers to predict new tumours or recurrence (28%), more clinical trials (20%), digital tools for quick screening results (18%), faster tests and scans, and self-monitoring of hormones in the blood. It is noteworthy that 60% of the MEN patients are not registered in any research database, despite almost all respondents (93%) being interested in registries. They hope for new knowledge about the disease and treatments. About 45% are not members of a patient group, although meetings with fellow patients are described as important (62%). The results of the survey indicate that German patients generally perceive the quality of medical care to be good. However, there are some unmet needs regarding access to reference centres, research registries and membership of patient organisations. In particular, the access to psychological help and communication between the different doctors involved in the care of MEN patients needs improvement.