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Endocrine Abstracts (2019) 65 P135 | DOI: 10.1530/endoabs.65.P135

1Queen Mary University, London, UK; 2AMEND, London, UK; 3Barts and the London School of Medicine and Dentistry, QMUL, London, UK


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 from clinical history plus 2 well-validated questionnaires: SAGIS assessment of GI symptoms on quality of life; PAC-QoL for the impact of constipation on daily activities.

Results: There were 85 respondents, MEN2B (n=28), MEN2A (n=57). In MEN2B, 85% reported two or more GI symptoms. Epigastric pain was reported by 92% (n=26), with 50% (n=14) scoring >7/28 in the SAGIS epigastric pain domain. Abdominal cramps were a problem for 71.4% (n=10) and half of these described cramps as very severe. Difficulties with swallowing affected 43% (n=12). Diarrhoea affected 82.1% (n=23), of whom half (n=11) had high calcitonin levels. There was a trend for higher SAGIS scores in MEN2B than MEN2A (not statistically significant in our small cohort). In MEN2B, constipation was a major problem, reported by 75% (n=21) with 38.8% (n=7) of these reporting a SAGIS score >10/12 in the constipation domain. In contrast, in MEN2A group, only one person (2.3%) scored >10/12. The effect of constipation on quality of life is severe in MEN2B; as measured by PAC-QOL. All patients reported dissatisfaction with their current treatment for constipation.

Conclusions: We report unmet needs of patients with MEN2B syndrome. The GI symptoms, especially constipation, had a severe impact on the quality of life in people with MEN2B. This suggests that there is room for improvement in the quality of care offered for these patients.

Volume 65

Society for Endocrinology BES 2019

Brighton, United Kingdom
11 Nov 2019 - 13 Nov 2019

Society for Endocrinology 

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