Darden C, Joish VN, Price MA, Garbinsky D, Schwartz S, Warner C, Wason S, Lapuerta P. Patient-reported activity impairment, work productivity loss, and carcinoid syndrome outcomes: interim analyses of the XERMELO patient registry. Poster presented at the NANETS 2020 Multidisciplinary Net Medical Virtual Symposium; October 2, 2020.

Background: Inadequately controlled carcinoid syndrome (CS) may impair daily activities and has been shown to reduce productivity with subsequent costs to society. In the third interim analysis of an ongoing registry, we analyzed activity impairment, productivity loss, and CS control and satisfaction reported by patients receiving telotristat ethyl (TE).

Methods: Ongoing, non-interventional prospective registry of patients with CS initiating TE who opt-in to online surveys every 6 months 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 (PGIC), and satisfaction with TE treatment. Characteristics and outcomes were evaluated using descriptive statistics.

Results: This interim analysis included 158 patients at baseline; 41% were ≥65 years old, 61% female, 83% white. Among patients with baseline and month 6 responses (n=79), 49% reported decreased activity impairment. Forty-six patients (29%) reported employment at baseline. Mean work productivity loss was 45% (SD, 27%) at baseline and 24% (SD, 19%) at month 6. Mean missed work hours due to CS in the previous 7 days was 3.2 (SD, 6.1) at baseline and 1.1 (SD, 2.5) at month 6. Most patients reported weight gain or maintenance, improvements in CS symptoms, and satisfaction with TE treatment at month 6.

Conclusion: Patients reported reduced activity impairment and work productivity losses after 6 months of TE treatment. Patients continued to report weight gain or stability by month 6, with improvements in CS symptom control and satisfaction with TE treatment.

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