Patient-Reported Activity Impairment, Work Productivity Loss, and Carcinoid Syndrome from the XERMELO Patient Registry

Patient-reported outcomes data of the XERMELO Patient Registry indicate that patients with neuroendocrine tumors (NETs) experiencing carcinoid syndrome (CS) reported improvement in CS symptom control and satisfaction with telotristat ethyl (TE) treatment, as well as reduced activity impairment and work productivity losses after 6 months of treatment.

The results of the third interim analysis of the ongoing XERMELO Patient Registry, which analyzed patient-reported CS symptom control and satisfaction, activity impairment, and productivity loss by patients who received TE, were reported at the 2020 North American Neuroendocrine Tumor Society Annual Symposium. 

The XERMELO Patient Registry is a noninterventional, prospective registry of patients with CS who initiated TE treatment. Registry patients participated in completing online surveys every 6 months for up to 3 years. Assessments include demographic and clinical characteristics, changes in activity impairment and work productivity, weight, CS symptoms, patient global impression of change, and satisfaction with TE treatment.

In this interim analysis, a total of 158 patients were included; of these, 41% of patients were aged ≥65 years and 61% were female. The predominant primary NET site was the small intestine (67%). The mean time from CS diagnosis to TE initiation was 5.6 years (standard deviation [SD], 4.9). The majority (97%) of patients had received long-acting monthly somatostatin analog injections in the past month, and had not received any additional treatments (73%) or undergone surgery in the past 6 months (87%).

Compared with baseline (N = 79), a greater proportion of patients reported satisfaction with CS diarrhea control, flushing, and overall symptoms at month 6; 77% of patients reported weight gain or maintenance after 6 months. Of the 78 patients evaluable for responses, 49% (95% confidence interval, 38%-60%) of patients reported decreased activity impairment. In terms of work productivity outcomes, the mean work productivity loss was 45% (SD, 27%) at baseline and 24% (SD, 19%) at month 6. Mean missed work hours resulting from CS symptoms in the previous 7 days was 3.2 (SD, 6.1) at baseline and 1.1 (SD, 2.5) at month 6.

These results indicate that patients with NETs experiencing CS reported improvement in CS symptom control and satisfaction with TE treatment, which translated into reduced activity impairment and work productivity losses after 6 months of treatment.

Source: Darden C, et al. North American Neuroendocrine Tumor Society 2020 Annual Symposium; October 1-3, 2020. Abstract C3.