Endocrine Abstracts

>Maasberg et al (2017) ‘demonstrated for the first time that nutritional status is an important independent risk factor for poorer survival’ in those with neuroendocrine neoplasms (NENs): it is evident in up to 40%, and can ‘increase risk of death 5-fold’. But there are many contributing factors, not least size, site, grade and differentiation of primary tumour, presence / absence of metastases and /or associated hormone syndromes, alongside the impact of treatments. Somatostatin analogs (SSAs) are a first-line treatment for many well-differentiated NENs: however, they can inhibit pancreatic function, which can lead to PEI. The first clinical study to recognise the association between somatostatin-analogs (SSAs) and development of PEI, was published in 2010 by Saif et al. The recommended treatment for PEI, is Pancreatic Enzyme Replacement Therapy (PERT). However, for the last 12 months, there has a significant UK supply shortage. A national Patient Safety Alert was issued May 2024 - with clinical guidance being informed by the Pancreatic Society of Great Britain & Ireland (PSGBI) Position Statement June 2024. Current advice centres around dietary modification and dose reduction, if possible, but this not without impact. In a recent survey undertaken by Neuroendocrine Cancer UK, 67% (94/140) of those with NEN-related PEI, have experienced difficulty in obtaining PERT: 37% being without any at all on at least one occasion: with 39% going without eating - if low/no supply available. More than 50% have reported increase in symptoms: 35% diarrhoea, bloating, 10% pain/cramping, 6% weight loss (>3 kgs) and 46% reporting a direct impact on mental health, with 13% unable to leave the house due to symptoms. It is therefore important that HCPs are aware of issues and the guidance available to help support those with NEN-related PEI. Resource links to guidance and advice are available at https://www.neuroendocrinecancer.org.uk/pert-update/