Prevalence of self-reported side effects in neuroendocrine tumour patients prescribed somatostatin analogues

Abstract

Somatostatin analogues (SSA) are a common treatment for some forms of neuroendocrine tumours (NETs). Patients report a variety of side effects after starting these drugs, so in most cases they require a lot of nutritional input. The authors used an online survey to invite responses from patients worldwide to determine the extent of reported side effects. Patients were asked which SSA they were taking and how they rated the severity of their side effects. They were provided with a list of 11 options to choose from, but not given any guidance or a definition of terms. The most commonly reported side effect was constipation (85%), with 8.6% of these respondents rating its severity as 10/10. The survey found that many self-reported side effects from the use of SSAs were experienced more frequently than previous clinical studies or the patient information leaflets reported. As this was an online survey, so the findings are limited in that first, this was a self-selected sample of patients and second, patients were able to respond more than once.

Differential diagnosis of diarrhoea in patients with neuroendocrine tumours: A systematic review

“…Proportion of patients with GEP-NETs and diarrhoea due to various causes: Twenty-one articles on 18 unique studies reported quantitative data related to different causes of diarrhoea in patients with GEP-NETs (Table 1 )[ 6 , 23 - 41 ]. The majority of articles reported on PEI and associated steatorrhoea in patients receiving treatment with SSAs; 9.5% to 84% of patients with NETs in the included studies were reported to have experienced steatorrhoea[ 26 , 31 ], the primary symptom of PEI. In four articles in which the management of steatorrhea was reported, almost all patients with steatorrhoea were treated for PEI (96%-100%)[ 27 , 29 , 30 ]; however, only 62.5% of patients with steatorrhoea may have been treated in one study (14.3% of the overall study cohort) (Table 1 )[ 40 ].…”

“…In four articles in which the management of steatorrhea was reported, almost all patients with steatorrhoea were treated for PEI (96%-100%)[ 27 , 29 , 30 ]; however, only 62.5% of patients with steatorrhoea may have been treated in one study (14.3% of the overall study cohort) (Table 1 )[ 40 ]. PEI was inferred from the reporting of steatorrhoea only in patients on SSAs in two publications, for example the presence of steatorrhoea “to varying degrees”[ 31 , 40 ]. It is important to acknowledge that this does not necessarily mean that these patients had PEI[ 31 , 40 ].…”

“…PEI was inferred from the reporting of steatorrhoea only in patients on SSAs in two publications, for example the presence of steatorrhoea “to varying degrees”[ 31 , 40 ]. It is important to acknowledge that this does not necessarily mean that these patients had PEI[ 31 , 40 ].…”

“…Approaches for inferring the cause of diarrhoea: Characteristics of diarrhoea associated with specific causes were described by 14 articles[ 24 , 31 , 38 , 39 , 42 - 45 , 47 , 48 , 50 , 58 - 60 ], and five articles described concomitant symptoms that may be present and may assist in a differential diagnosis ( )[ 6 , 44 , 50 , 60 , 61 ]. Characteristics and symptoms described in the literature were as follows: Diarrhoea due to PEI was described as greasy, foul-smelling, floating stools[ 24 , 42 - 45 , 47 , 59 ], known clinically as steatorrhoea; patients with PEI may also have bloating, weight loss and signs of malabsorption[ 6 , 44 , 60 ]; BAM diarrhoea may be choleretic[ 61 ]; patients with SIBO may experience a change from initially intermittent diarrhoea (caused by CS) to continuous diarrhoea, with associated flatulence, bloating and borborygmic sounds[ 61 ]; characteristics of SBS diarrhoea were not reported, but other symptoms may include significant weight loss, electrolyte disturbance and hydration issues[ 61 ].…”

“…Advice and suggestions for the differential diagnosis of diarrhoea in patients with GEP-NETs: Six articles suggested ways to approach differential diagnosis of diarrhoea in GEP-NETs, including improving patient and clinician awareness of SSA-related diarrhoea or steatorrhoea[ 6 , 38 ], directly asking patients about diarrhoea[ 31 ], regular screening for malnutrition[ 31 , 66 ], and involvement of a multidisciplinary team of specialists, particularly gastroenterologists[ 24 , 33 , 38 ]. Representative quotations are presented in Figure 3 , and full study details are available in .…”