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Table 1 Comparison of Demographic and Clinical Characteristics between Participants with Carcinoid Syndrome Responding to Survey at Time Point 1 vs. both Time Point 1 and Time Point 2

From: Assessment of change in quality of life, carcinoid syndrome symptoms and healthcare resource utilization in patients with carcinoid syndrome

  All Patients   Only Time Point 1 Both Time Point 1 and Time Point 2 p-valuea
  (N = 117)    (N = 28)    (N = 89)   
Demographic characteristics
Male, N (%) 27 (23)   5 (18)   22 (25)   0.452
Age (years), mean [median] (SD) 58.0 [57.0] (9.8) 54.1 [56.5] (11.1) 59.2 [59.0] (9.1) 0.099
Age group, N (%)           0.153
 18–34 years 3 (3)   2 (7)   1 (1)   
 35–44 years 5 (4)   2 (7)   3 (3)   
 45–54 years 31 (26)   6 (21)   25 (28)   
 55–64 years 46 (39)   14 (50)   32 (36)   
 65–74 years 27 (23)   4 (14)   23 (26)   
 75+ years 5 (4)   0 (0)   5 (6)   
Race, N (%)b
 Caucasian 106 (91)   23 (82)   83 (93)   0.130
 Black or African American 6 (5)   3 (11)   3 (3)   0.148
 Hispanic or Latino 5 (4)   2 (7)   3 (3)   0.592
 Asian/Pacific Islander 0 (0)   0 (0)   0 (0)  
 Native American/American Indian 1 (1)   1 (4)   0 (0)   0.239
 Other 3 (3)   2 (7)   1 (1)   0.142
 Region of residence, N (%)           0.586
 Northeast 21 (18)   4 (14)   17 (19)   
 South 41 (35)   11 (39)   30 (34)   
 Midwest 30 (26)   9 (32)   21 (24)   
 West 25 (21)   4 (14)   21 (24)   
Clinical characteristics
Primary site of NET, N (%)b
 Lung 11 (9)   0 (0)   11 (12)   0.064
 Stomach 11 (9)   5 (18)   6 (7)   0.130
 Duodenum 10 (8)   1 (4)   9 (10)   0.448
 Jejunum 6 (5)   0 (0)   6 (7)   0.333
 Ileum 55 (47)   14 (50)   41 (46)   0.716
 Appendix 12 (10)   4 (14)   8 (9)   0.478
 Colon 10 (8)   2 (7)   8 (9)   1.000
 Rectum 0 (0)   0 (0)   0 (0)  
 Other primary sitec 30 (26)   5 (18)   25 (28)   0.279
Time since NET diagnosis (years), mean [median] (SD) 8.3 [6.7] (6.0) 7.5 [6.6] (5.8) 8.6 [6.8] (6.0) 0.338
Time since CS diagnosis (years), mean [median] (SD) 7.1 [4.8] (5.5) 6.1 [4.3] (5.5) 7.4 [5.1] (5.6) 0.220
CS symptoms experienced after NET diagnosis, N (%)
 Cyanosis 14 (12)   5 (18)   9 (10)   0.318
 Carcinoid diarrhea 114 (97)   28 (100)   86 (97)   1.000
 Carcinoid heart 15 (13)   3 (11)   12 (14)   1.000
 Flushing 106 (91)   26 (93)   80 (90)   1.000
 Peripheral edema 54 (46)   15 (54)   39 (44)   0.367
 Wheezing 48 (41)   11 (39)   37 (4)   0.830
Current activity level, N (%)           0.285
 I have normal activity, without symptoms 11 (9)   5 (18)   6 (7)   
 Have symptoms, but do not require bed rest during waking day 70 (60)   14 (50)   56 (63)   
 Require bed rest during < 50% of waking day 30 (26)   8 (29)   22 (25)   
 Require bed rest during 50% + of waking day 6 (5)   1 (4)   5 (6)   
 Unable to get out of bed 0 (0)   0 (0)   0 (0)   
  1. Abbreviations: NET neuroendocrine tumor, SD standard deviation; T1 time point 1, T2 time point 2
  2. ap-values were calculated to compare characteristics between patients completing survey at T1 only vs. those completing survey at T1 and T2
  3. bRespondents were allowed to select multiple responses, so counts and percentages may not sum to the total N or 100%
  4. cOther primary NET sites include breast, cecum, intestines, liver, mesentery, pancreas, small intestine, ureter, and unknown