Endocrine Abstracts

Background: The prevalence of small intestine neuroendocrine tumors (SI-NETs) is increasing. Disease progression is often slow, treatment options and long-term survival rates have improved. Health-related quality of life (HRQoL) is considered an important measure of patients’ perception of the burden of their disease and the impact of treatment modalities. Despite this, data on whether improvements in treatment options and survival rates also translate into improved HRQoL in patients with SI-NETs are scarce.

Objective: To assess HRQoL and its predictors in carefully characterized SI-NET patients, and compare the results to that of a general population in Finland.

Design: We studied HRQoL with 15D and SF-36 questionnaires in 134 grade 1 and 2 SI-NET patients and compared 15D results to those of age- and gender-standardized general population (n=1153). Patients with histologically confirmed diagnosis of SI-NET treated at the Division of Endocrinology and Department of Oncology of the Helsinki University Hospital during year 2017 were included in the study. We studied whether socioeconomic factors, disease characteristics including treatment modalities, medication and/or comorbidities predicted HRQoL.

Results: Mean disease duration was 81 (4–468) months, 91% had metastatic disease and 79% received somatostatin analog treatment. Hepatic tumor load was 0% in 44.8%, <10–25% and >25% in 44% and 11.2%, respectively. Ki-67 was 3.7 (0.5–15) %. Mean fP-CgA and S-5HIAA concentrations were 15 (1.3–250) and 344 (24–7470) nmol/l, respectively. Overall HRQoL was significantly impaired in patients compared to controls (total 15D scores 0.864±0.105 vs 0.905±0.028, P<0.001). SI-NET patients scored worse on 9 of 15 dimensions (sleep, excretion, depression, distress, vitality, sexual activity (P< 0.001), breathing, usual activities and discomfort and symptoms (P< 0.01–0.05). SF-36 dimension scores correlated highly with total 15D score (P<0.001). Patients with low 15D score in excretion dimension (impaired excretion, n=85) had significantly impaired HRQoL compared to those (n=49) without impaired excretion (0.828 vs 0.933, P<0.001). Diarrhea, depression and number of medications independently predicted impaired HRQoL. In contrast, age, gender, educational level, Ki67 index, hepatic tumor burden, S-5HIAA, cardiovascular or diabetes comorbidity, somatostatin analog or interferon therapy or peptide receptor radionuclide therapy did not predict HRQoL.

Conclusions: Overall HRQoL is severely impaired in SI-NET patients. The most affected dimensions are excretion, sleeping, depression, distress, vitality and sexual activity. Improved treatments of diarrhea and depression are warranted.