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Medicine (Baltimore). 2018 Nov;97(47):e13390. doi: 10.1097/MD.0000000000013390.

Impact of carcinoid syndrome symptoms and long-term use of somatostatin analogs on quality of life in patients with carcinoid syndrome: A survey study.

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Department of Gastrointestinal Medical Oncology, University of Texas MD Anderson Cancer Center, Houston, TX.
Analysis Group, Inc, Boston, MA.
Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL.
Terasaki Research Institute, Los Angeles, CA.
Novartis Pharmaceuticals Corporation, East Hanover, NJ.


To evaluate association of carcinoid syndrome (CS) symptom burden and somatostatin analog (SSA) duration with quality of life (QoL) using Functional Assessment of Cancer Therapy-General (FACT-G) and Patient-Reported Outcomes Measurement Information System (PROMIS-29) instruments.Adults who received treatment for CS symptoms in the US were recruited to participate in a cross-sectional online survey (July-October, 2016). Demographic, clinical, and QoL questions (FACT-G, 29 CS-related supplemental questions, PROMIS-29) were included. Descriptive and multivariable regression analyses adjusting for demographic and clinical characteristics followed.Most (98%) of the 117 patients received SSAs in the prior month. Multivariable regression analysis showed ≥4 bowel movements/day (vs <4) and each additional CS symptom was associated with 7.1 (P = .043) and 3.4 (P = .034) point FACT-G total score decreases, respectively. Requiring bed rest (vs normal activity) was associated with significant decreases in FACT-G total score (P < .001). There were similar associations for FACT-G subscales, supplemental questions, and PROMIS-29. After adjustment, FACT-G total score was significantly higher (11.3 points; P = .033) for patients treated with SSA >8 years versus <2.7 years.CS symptom burden was observed to be associated with lower QoL scores, measured by FACT-G. Patients with >8 years SSA treatment duration versus <2.7 years had higher QoL.

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