Trial Outcomes & Findings for Real-world Evidence Study EvaLuating PAtient-Reported Outcomes With XERMELO (NCT NCT03223428)

NCT ID: NCT03223428

Last Updated: 2024-07-24

Results Overview

The percentage of CS patients who are satisfied with their overall symptom control, 6 months after initiating treatment with telotristat ethyl (XERMELO). Satisfaction with how Xermelo has controlled diarrhea, flushing, and overall CS symptoms was assessed at the initial 6-month follow-up. The questionnaire allowed participants to choose a response on a 5-level Likert scale ranging from "Very dissatisfied" (level 1) to "Very satisfied" (level 5). For the assessments of satisfaction with control of diarrhea and flushing, "Not applicable" (level 0) was a response option for participants who do not have the particular symptom that is being assessed.

Recruitment status

COMPLETED

Target enrollment

223 participants

Primary outcome timeframe

Baseline to 6 months

Results posted on

2024-07-24

Participant Flow

Eligible patients were invited to participate in the RELAX study by the enrolling Specialty Pharmacies EnvoyHealth (also known as Diplomat Specialty Pharmacy and Optum Specialty Pharmacy) and Biologics Specialty Pharmacy.

Participant milestones

Participant milestones
Measure
Carcinoid Syndrome Patients Initiating Xermelo
Patients with Carcinoid Syndrome who are initiating treatment with XERMELO. Xermelo: This study will include patients with carcinoid syndrome who are initiating treatment with XERMELO.
Overall Study
STARTED
223
Overall Study
COMPLETED
125
Overall Study
NOT COMPLETED
98

Reasons for withdrawal

Reasons for withdrawal
Measure
Carcinoid Syndrome Patients Initiating Xermelo
Patients with Carcinoid Syndrome who are initiating treatment with XERMELO. Xermelo: This study will include patients with carcinoid syndrome who are initiating treatment with XERMELO.
Overall Study
No longer taking Xermelo
27
Overall Study
Declined Consent
1
Overall Study
Non-responders
56
Overall Study
Withdrawal by Subject
14

Baseline Characteristics

Age was not collected for one (1) patient.

Baseline characteristics by cohort

Baseline characteristics by cohort
Measure
Carcinoid Syndrome Patients Initiating Xermelo
n=223 Participants
Patients with Carcinoid Syndrome who are initiating treatment with XERMELO. Xermelo: This study will include patients with carcinoid syndrome who are initiating treatment with XERMELO.
Age, Categorical
<=18 years
0 Participants
n=222 Participants • Age was not collected for one (1) patient.
Age, Categorical
Between 18 and 65 years
138 Participants
n=222 Participants • Age was not collected for one (1) patient.
Age, Categorical
>=65 years
84 Participants
n=222 Participants • Age was not collected for one (1) patient.
Age, Continuous
60.8 years
STANDARD_DEVIATION 10.99 • n=222 Participants • One patient did not provide age during the baseline survey
Sex: Female, Male
Female
135 Participants
n=223 Participants
Sex: Female, Male
Male
88 Participants
n=223 Participants
Ethnicity (NIH/OMB)
Hispanic or Latino
13 Participants
n=223 Participants
Ethnicity (NIH/OMB)
Not Hispanic or Latino
208 Participants
n=223 Participants
Ethnicity (NIH/OMB)
Unknown or Not Reported
2 Participants
n=223 Participants
Race (NIH/OMB)
American Indian or Alaska Native
0 Participants
n=223 Participants
Race (NIH/OMB)
Asian
1 Participants
n=223 Participants
Race (NIH/OMB)
Native Hawaiian or Other Pacific Islander
1 Participants
n=223 Participants
Race (NIH/OMB)
Black or African American
16 Participants
n=223 Participants
Race (NIH/OMB)
White
199 Participants
n=223 Participants
Race (NIH/OMB)
More than one race
4 Participants
n=223 Participants
Race (NIH/OMB)
Unknown or Not Reported
2 Participants
n=223 Participants
Region of Enrollment
United States
223 participants
n=223 Participants
Baseline Weight
80.9 kilogram
STANDARD_DEVIATION 22.5 • n=223 Participants

PRIMARY outcome

Timeframe: Baseline to 6 months

The percentage of CS patients who are satisfied with their overall symptom control, 6 months after initiating treatment with telotristat ethyl (XERMELO). Satisfaction with how Xermelo has controlled diarrhea, flushing, and overall CS symptoms was assessed at the initial 6-month follow-up. The questionnaire allowed participants to choose a response on a 5-level Likert scale ranging from "Very dissatisfied" (level 1) to "Very satisfied" (level 5). For the assessments of satisfaction with control of diarrhea and flushing, "Not applicable" (level 0) was a response option for participants who do not have the particular symptom that is being assessed.

Outcome measures

Outcome measures
Measure
Carcinoid Syndrome Patients Initiating Xermelo
n=125 Participants
Patients with Carcinoid Syndrome who are initiating treatment with XERMELO. Xermelo: This study will include patients with carcinoid syndrome who are initiating treatment with XERMELO.
Percentage of Patients Who Are Satisfied With Their Overall Symptom Control
Very Satisfied with symptom control
37 Participants
Percentage of Patients Who Are Satisfied With Their Overall Symptom Control
Somewhat satisfied with symptom control
58 Participants
Percentage of Patients Who Are Satisfied With Their Overall Symptom Control
Neither satisfied or dissatisfied with symptom control
22 Participants
Percentage of Patients Who Are Satisfied With Their Overall Symptom Control
Somewhat dissatisfied with symptom control
5 Participants
Percentage of Patients Who Are Satisfied With Their Overall Symptom Control
Very dissatisfied with symptom control
3 Participants

SECONDARY outcome

Timeframe: Baseline to 6 months

Estimate percentage of patients reporting satisfaction with CS-related diarrhea control from Baseline to 6 months after starting Xermelo. At baseline participants were asked, "Currently, how satisfied are you with how your diarrhea is controlled?" At the 6-month follow-up survey, participants were asked, "Currently, how satisfied are you with how Xermelo has controlled your diarrhea?"

Outcome measures

Outcome measures
Measure
Carcinoid Syndrome Patients Initiating Xermelo
n=125 Participants
Patients with Carcinoid Syndrome who are initiating treatment with XERMELO. Xermelo: This study will include patients with carcinoid syndrome who are initiating treatment with XERMELO.
Percentage of Patients Reporting Satisfaction of CS-related Diarrhea Control
Very satisfied
46 Participants
Percentage of Patients Reporting Satisfaction of CS-related Diarrhea Control
Somewhat satisfied
51 Participants
Percentage of Patients Reporting Satisfaction of CS-related Diarrhea Control
Neither satisfied nor dissatisfied
12 Participants
Percentage of Patients Reporting Satisfaction of CS-related Diarrhea Control
Somewhat dissatisfied
11 Participants
Percentage of Patients Reporting Satisfaction of CS-related Diarrhea Control
Very dissatisfied
5 Participants

SECONDARY outcome

Timeframe: Baseline to 6 months

Estimate percentage of patients reporting satisfaction with CS-related flushing control from Baseline to 6 Months. At baseline, participants who had reported flushing as a symptom were asked, "Currently, how satisfied are you with how your flushing is controlled?" At 6 months, participants who had reported flushing as a symptom at Baseline were asked, "Currently, how satisfied are you with how Xermelo has controlled your flushing?"

Outcome measures

Outcome measures
Measure
Carcinoid Syndrome Patients Initiating Xermelo
n=108 Participants
Patients with Carcinoid Syndrome who are initiating treatment with XERMELO. Xermelo: This study will include patients with carcinoid syndrome who are initiating treatment with XERMELO.
Percentage of Patients Reporting Satisfaction of CS- Related Flushing Control
Very satisfied
24 Participants
Percentage of Patients Reporting Satisfaction of CS- Related Flushing Control
Somewhat satisfied
39 Participants
Percentage of Patients Reporting Satisfaction of CS- Related Flushing Control
Neither satisfied nor dissatisfied
34 Participants
Percentage of Patients Reporting Satisfaction of CS- Related Flushing Control
Somewhat dissatisfied
7 Participants
Percentage of Patients Reporting Satisfaction of CS- Related Flushing Control
Very dissatisfied
4 Participants

SECONDARY outcome

Timeframe: Baseline to 6 months

Number of participants reporting a reduction in rescue SSA use at 6 months after initiating treatment with Xermelo.

Outcome measures

Outcome measures
Measure
Carcinoid Syndrome Patients Initiating Xermelo
n=104 Participants
Patients with Carcinoid Syndrome who are initiating treatment with XERMELO. Xermelo: This study will include patients with carcinoid syndrome who are initiating treatment with XERMELO.
Number of Patients Reporting Reduction in Rescue SSA Use
21 participants

SECONDARY outcome

Timeframe: Baseline to 6 months

Percentage of patients reporting a reduction in the dose of long-acting SSA injection 6 months after patients initiated treatment with Xermelo

Outcome measures

Outcome measures
Measure
Carcinoid Syndrome Patients Initiating Xermelo
n=125 Participants
Patients with Carcinoid Syndrome who are initiating treatment with XERMELO. Xermelo: This study will include patients with carcinoid syndrome who are initiating treatment with XERMELO.
Percentage of Patients Reporting Reduction in the Dose of Long-acting SSA Injection
7 Participants

SECONDARY outcome

Timeframe: Baseline to 6 months

Population: There was a discrepancy between how many patients answered the survey for "Reduction in dose of long-acting SSA" (n=125) and "Reduction in frequency of long-acting SSA" (n=123). Two people did not answer the latter question but did answer the former.

Estimate Percentage of Patients Reporting Reduction in the Frequency of Long-acting SSA Injection 6 months after patients initiated treatment with Xermelo

Outcome measures

Outcome measures
Measure
Carcinoid Syndrome Patients Initiating Xermelo
n=123 Participants
Patients with Carcinoid Syndrome who are initiating treatment with XERMELO. Xermelo: This study will include patients with carcinoid syndrome who are initiating treatment with XERMELO.
Percentage of Patients Reporting Reduction in the Frequency of Long-acting SSA Injection
9 Participants

SECONDARY outcome

Timeframe: Baseline to 6 months

Estimate percentage of patients reporting an overall improvement in CS symptom control (diarrhea, flushing, frequency of BMs) after initiating Xermelo based on Patient Global Impression of Change (PGIC)

Outcome measures

Outcome measures
Measure
Carcinoid Syndrome Patients Initiating Xermelo
n=125 Participants
Patients with Carcinoid Syndrome who are initiating treatment with XERMELO. Xermelo: This study will include patients with carcinoid syndrome who are initiating treatment with XERMELO.
Percentage of Patients Reporting an Overall Improvement in CS Symptom Control Based on Patient Global Impression of Change (PGIC)
Very much improved
20 Participants
Percentage of Patients Reporting an Overall Improvement in CS Symptom Control Based on Patient Global Impression of Change (PGIC)
Much improved
28 Participants
Percentage of Patients Reporting an Overall Improvement in CS Symptom Control Based on Patient Global Impression of Change (PGIC)
Somewhat improved
49 Participants
Percentage of Patients Reporting an Overall Improvement in CS Symptom Control Based on Patient Global Impression of Change (PGIC)
No change
20 Participants
Percentage of Patients Reporting an Overall Improvement in CS Symptom Control Based on Patient Global Impression of Change (PGIC)
Somewhat worse
6 Participants
Percentage of Patients Reporting an Overall Improvement in CS Symptom Control Based on Patient Global Impression of Change (PGIC)
Much worse
1 Participants
Percentage of Patients Reporting an Overall Improvement in CS Symptom Control Based on Patient Global Impression of Change (PGIC)
very much worse
1 Participants

SECONDARY outcome

Timeframe: Baseline to 6 months

Population: Only 124 patients answered the work activity and impairment questionnaire. Not all patients were employed and only a small subset were eligible to answer the Absenteeism, Presenteeism and Work Productivity Loss. Only 34, 32 and 32 patients answered those questionnaires, respectively.

Estimate of the percentage of patients who had reduction in work-related absenteeism, presenteeism, activity impairment, and overall productivity loss based on Worker Productivity and Activity Impairment: Specific Health Problem v2.0 (WPAI- SHP). The percentage change was measured from baseline to 6 months after treatment with telotristat ethyl.

Outcome measures

Outcome measures
Measure
Carcinoid Syndrome Patients Initiating Xermelo
n=125 Participants
Patients with Carcinoid Syndrome who are initiating treatment with XERMELO. Xermelo: This study will include patients with carcinoid syndrome who are initiating treatment with XERMELO.
Percentage Change of Patients Who Had Reduction in Work-related Absenteeism, Presenteeism, Activity Impairment, and Overall Productivity Loss From Baseline to 6 Months After Initiating Telotristat Ethyl Based on WPAI-SHP
Absenteeism
4.1 percentage change baseline to Month 6
Standard Deviation 21.86
Percentage Change of Patients Who Had Reduction in Work-related Absenteeism, Presenteeism, Activity Impairment, and Overall Productivity Loss From Baseline to 6 Months After Initiating Telotristat Ethyl Based on WPAI-SHP
Presenteeism
-9.7 percentage change baseline to Month 6
Standard Deviation 20.76
Percentage Change of Patients Who Had Reduction in Work-related Absenteeism, Presenteeism, Activity Impairment, and Overall Productivity Loss From Baseline to 6 Months After Initiating Telotristat Ethyl Based on WPAI-SHP
Work productivity loss
-10.1 percentage change baseline to Month 6
Standard Deviation 19.60
Percentage Change of Patients Who Had Reduction in Work-related Absenteeism, Presenteeism, Activity Impairment, and Overall Productivity Loss From Baseline to 6 Months After Initiating Telotristat Ethyl Based on WPAI-SHP
Activity impairment
-8.1 percentage change baseline to Month 6
Standard Deviation 26.86

SECONDARY outcome

Timeframe: Baseline to 6 months

Estimate of the percentage of patients reporting weight gain after initiating Xermelo therapy.

Outcome measures

Outcome measures
Measure
Carcinoid Syndrome Patients Initiating Xermelo
n=125 Participants
Patients with Carcinoid Syndrome who are initiating treatment with XERMELO. Xermelo: This study will include patients with carcinoid syndrome who are initiating treatment with XERMELO.
Percentage of Patients Reporting Weight Gain
24 Participants

Adverse Events

Carcinoid Syndrome Patients Initiating Xermelo

Serious events: 0 serious events
Other events: 0 other events
Deaths: 0 deaths

Serious adverse events

Adverse event data not reported

Other adverse events

Adverse event data not reported

Additional Information

Noran Osman, PharmD, MHS, Associate Director, External Research and Medical

TerSera Therapeutics LLC

Phone: +1-224-754-4605

Results disclosure agreements

  • Principal investigator is a sponsor employee
  • Publication restrictions are in place