The Carcinoid Impact Survey

The Carcinoid Impact Survey

As a rare disease that’s commonly misdiagnosed, Carcinoid Syndrome has remained underrepresented online and in the cancer community. In 2016, we decided to change that. Over the course of the year, we asked over 500 people being treated for Carcinoid Syndrome, caregivers, 150 oncologists, and 7 leading national and regional carcinoid support groups to participate in the largest survey about Carcinoid Syndrome in the US, to date.

As a part of the Carcinoid Syndrome community, Lexicon Pharmaceuticals developed the Carcinoid Impact Survey. We wanted to understand how Carcinoid Syndrome affects the lives of those who suffer from it and help spread awareness about the disease.

What we learned

  • Patient and caregiver lives are significantly disrupted by Carcinoid Syndrome
  • Many doctors are not fully aware of their patients’ distress but if made aware, believe they can help better address the situation
  • Nearly everyone wants new treatment solutions that will help improve the lives of people suffering with Carcinoid Syndrome

Key findings and statistics

Daily life is challenging
80%

of patients reported not feeling well has become "normal"

96%

of patients alter their schedules due to Carcinoid Syndrome

82%

of patients living with Carcinoid Syndrome report it as a daily challenge

87%

reported living with Carcinoid Syndrome is stressful

Current treatments aren’t enough
Over 2/3 of oncologists and patients agree that today’s treatments do not do enough to control symptoms.
97%

of patients experience symptoms at least once a month, despite receiving treatment

58%

of patients experience symptoms for over half of the month, despite receiving treatment

Nearly all participating patients and oncologists would welcome more treatment options for Carcinoid Syndrome.
Symptoms are underreported
1wk

Most oncologists believe symptoms affect their patients up to 1 week each month

3wks

But most patients report having symptoms at least 3 weeks each month

Less than 25% of oncologists think that a patient's everyday life is significantly disrupted due to their Carcinoid Syndrome.
Communication is key
83%

of patients with diarrhea agree that reducing it by even 1 episode per day would be meaningful

89%

of oncologists are confident they can help patients manage their Carcinoid Syndrome symptoms when they’re made aware

95%

of oncologists reported that they would be open to adjusting a patient’s treatment because of bothersome carcinoid symptoms, if asked

81%

of oncologists believe patients have questions about their Carcinoid Syndrome that they have not yet asked

It’s time for a change
Nearly all patients and oncologists recognize the need for new treatment options; therefore, an honest dialogue around the impact of symptoms should occur.

The Carcinoid Impact Survey was made in partnership with the following support groups:

  • Carcinoid Cancer Foundation (CCF)
  • Neuroendocrine Cancer Awareness Network (NCAN)
  • Neuroendocrine Tumor Research Foundation (NETRF)
  • Healing NET Foundation
  • Los Angeles Carcinoid Neuroendocrine Tumor Society (LACNETS)
  • NorCal CarciNET Community
  • Big Apple NETs
The Carcinoid Impact Survey was made in partnership 7 carcinoid syndrome support groups and over 500 patients and caregivers