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

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


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.

Publication types

  • Observational Study

MeSH terms

  • Adult
  • Aged
  • Cross-Sectional Studies
  • Female
  • Humans
  • Male
  • Malignant Carcinoid Syndrome / drug therapy*
  • Malignant Carcinoid Syndrome / psychology
  • Middle Aged
  • Quality of Life*
  • Somatostatin / therapeutic use*


  • Somatostatin