Endocrine Abstracts

Background: Patients with neuroendocrine neoplasms (NENs) have a high burden of chronic symptoms. We assessed symptom burden and overall quality of life (QOL) for eNET study participants and analyzed differences by age, sex, and NEN primary site.

Methods: eNET is a prospective, cohort study on the Eureka digital health platform enrolling individuals with advanced NENs. Participants completed validated surveys on an internet-supported device at baseline and then every 6 to 12 months for a total of 3 years. We compared baseline responses on two EORTC QOL questionnaires (QLQ-C30 and QLQ-GINET2) by Pearson chi-squared or Kruskal-Wallis tests.

Results: A total of 124 participants (71% women; 69% age >60 years; 26% pancreatic, 58% gastrointestinal, 16% other primary sites) completed the baseline EORTC questionnaires. Over 10% of participants reported they experienced “very much” of the following symptoms or problems in the prior week: abdominal discomfort (11%), worry about test results (12%), disease or treatment affecting sex life for the worse (12%), distress about illness or treatment to those close to you (15%), fear of recurrence (18%), and worry about health in the future (22%). Compared with older participants, those <60 years old were more likely to have been told by others they looked flushed (P =0.042), to be concerned about disruption of home life (P =0.021), to report their illness or treatment had been distressing to those close to them (p<0.001), to report problems receiving adequate information about disease and treatment (P =0.002), and to report financial difficulties (P =0.039). There was also a trend towards younger patients having a higher fear of recurrence compared with older patients (P =0.054). As to differences by sex, women were more likely than men to report problems receiving adequate information about disease and treatment (P =0.040) and reported more trouble sleeping (P =0.043) and worse overall physical function (P =0.047). The only significant difference by primary site across both surveys was that participants with “other” primary sites had more dyspnea than those with GI or pancreatic primaries (P =0.031). Otherwise, responses were similar by sex, age, and primary site.

Conclusion: eNET participants reported more social-emotional symptom burden (worries about future health, fear of recurrence, and relationship issues) as opposed to physical symptom burden. Younger participants were particularly affected by these issues and may represent a group to target for survivorship interventions to reduce distress and improve QOL. There are also opportunities to better inform patients, particularly women and younger patients, about their disease and treatment.

Abstract ID 23752