Carcinoid Syndrome Impact Survey: Evaluation of the Burden of Illness and the Gap Between Patient and Oncologist Perceptions

Background: Patients with advanced neuroendocrine tumors may develop carcinoid syndrome, a rare condition characterized by debilitating symptoms, including diarrhea, flushing, and valvular heart damage, that can greatly affect patient social and physical functioning. Limited information is available on the physician perceptions of carcinoid syndrome and areas that differ from patient perceptions.

Objectives: The Carcinoid Syndrome Impact Survey was designed to probe potential gaps in oncologist, patient, and caregiver perceptions and the overall burden of the disease.

Methods: The survey, designed in collaboration with patient advocacy groups, was conducted (June-October 2016) among 538 patients with carcinoid syndrome, 94 caregivers, and 151 oncologists. The online, anonymous survey consisted of demographic and disease-related questions, including symptom frequency and impact on daily living of carcinoid syndrome. Each group of respondents was given mirrored questions whenever possible to allow for comparison across groups. Questions were based primarily on a 4-level Likert scale.

Results: Differences in perception of symptom frequency, syndrome severity, and impact of carcinoid syndrome on daily living were observed between patients, caregivers, and oncologists. Patients and caregivers were more likely to report symptom frequency as >21 days per month (39% of caregivers vs 38% of patients vs 4% of oncologists). Most oncologists cited symptom frequency as 1 to 7 days per month (50% of oncologists). Patients were more likely to report carcinoid syndrome affecting them “a great deal” (62% of patients vs 23% of oncologists). Caregivers were most likely to report the highest category of severity compared with patients and physicians (39% of caregivers vs 25% of patients vs 17% of oncologists).

Conclusions: Oncologists may not be fully aware of the impact of carcinoid syndrome on patient daily living. Furthermore, caregivers may perceive aspects of disease burden to which patients have habituated and may not report as frequently. Tools to encourage more explicit dialogue between patients with carcinoid syndrome and oncologists are needed to narrow the information gap and subsequently improve treatment outcomes.

Funding: Lexicon Pharmaceuticals, Inc.

Previously Presented At: ASCO Quality Care Symposium, March 3-4, 2017.