Introduction: In practice, many patients with NETs report a change in symptoms after starting somatostatin analogues (SSA’s). Many health professionals and NET patient advocates have noticed that some of the side effects experienced by patients are more common than patient information literature suggests. It is therefore important to ask what and how severe experiences are, and compare to literature, to help raise awareness amongst NET health professionals.
Aim(s): Assess what side effects patients report after starting SSA. Assess the severity of side effects reported by patients after starting SSA. Produce recommendations on how to deal with side effects of SSA’s.
Materials and methods: A survey was created using SurveyMonkey and then posted on social media (twitter), within a closed NET patient support group and an open advocacy site. It was open to anyone worldwide. Patients were asked 2 questions: 1) Which somatostatin analogue has been prescribed. 2) Rate the severity (0-10) of any side effects they have experienced. A list of 11 options was given: constipation, steatorrhoea, diarrhoea, feeling the burden of treatment, vitamin B12 deficiency, hair thinning, nausea, fat soluble vitamin deficiency, weight loss, low glucose level and gallstones. They were not given any guidance or definitions of terms.
Conference: 15th Annual ENETS conference 2018 (2018)
Category: Epidemiology/Natural history/Prognosis- Registries, nationwide and regional surveys
Presenting Author: Tara Whyand
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