Endocrine Abstracts

Lay summary uses are multitudinous with their overall purpose being to engage the average person’s interest and thereafter increase their understanding of a subject unfamiliar to them. In medicine, there is rightly an emphasis on ensuring that a patient fully understands what is happening to them in order that they may become an effective participatory member in their own care. However, literacy levels are surprisingly low, even in developed nations, and it therefore foll...

These days, many children with a RET gene change are diagnosed through genetic screening programmes when there is a parent with the gene change. I wasn’t one of those children and was not diagnosed with MEN2 until I was 31 years old. My son was diagnosed through screening at 2 years old. I will share our family’s story of how we adjusted to the ’new normal’, and how we live with this condition day-to-day more than 20 years down the line. I will also share s...

Multiple endocrine neoplasia (MEN) disorders are autosomal dominantly inherited syndromes characterised by multi-glandular adenomas/carcinomas. AMEND is a charity providing support and information resources to MEN patients. A recent anonymous online patient survey was conducted by AMEND into the psycho-social impact of the conditions. 219 patients participated (n101 MEN1, n60 MEN2a, n26 MEN2b, n32 other) with a mean age of 47.5 years. 57% felt that their condition had a negati...

Introduction: Besides medullary thyroid carcinoma and other endocrinopathies, people with MEN 2B have intestinal ganglioneuromatosis. A recent MEN2B cohort study reported high rates of gastrointestinal (GI) symptoms: we hypothesized these might have a major impact on patients’ daily lives.Methods: An online survey was conducted among patients from Association for Multiple Endocrine Neoplasia Disorders (AMEND). This incorporated relevant elements fro...

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=2...

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 countri...