Endocrine Abstracts

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 negative impact on their long-term mental/emotional well-being, 51% felt that their condition had a negative impact on their employment/career, and 54% felt that the condition had a negative impact on their family life. 83% of respondents felt confident discussing their condition with their specialist, but 55% felt that their GP did not understand the condition; results that correlate with an earlier study (1). Berglund et al. (2003) found that depression rates increased with disease burden in MEN1(2). In a 2013–2016 survey of AMEND’s free counselling service, 84% of users rating the service as useful or very useful. It also showed common negative impact themes including dealing with diagnosis (73%), work-related issues (47%), relationship issues (50%), symptom/treatment management (83%) and fears for the future (80%). A notable 33% had suicidal thoughts.

Conclusion: Larger multi-centre studies are required to fully understand the needs of patients with chronic genetic conditions, and access to a range of psycho-social support services should be improved.

References (1) Cleiren M P et al., Living with a hereditary form of cancer: experiences and needs of MEN 2 patients and their families, Henry Ford Hospital Medical Journal, 1989 37(3–4) 164-166.

(2) Berglund G., et al., Quality of life in patients with multiple endocrine neoplasia type 1 (MEN 1), Familial Cancer, 2003 2(1) 27–33.