Table 1 The characteristics of IBD patients and Caregivers

Age, mean (SD)

37.7 (17.1)

40.9 (15)

48 (15.5)

Gender % (n)

69.8% Female (37)

69.4% Female (34)

48% Female (49)

 White Non-Hispanic

67.9% (36)

71.4% (35)

58.8% (60)

 White Hispanic

11.3% (6)

12.2% (6)

13.7% (14)

 Other

5.6% (3)

8.2% (4)

11.8% (12)

 Black/African American

5.6% (3)

0% (0)

3.9% (4)

 Asian

7.5% (4)

8.2% (4)

11.7% (12)

 American Indian/Alaska Native

1.9% (1)

0% (0)

0% (0)

Abdominal Surgery % (n)

52.8% Yes (28)

12.2% Yes (6)

N/A

Fistula % (n)

41.5% Yes (22)

16.3% Yes (8)

N/A

Medication Use % (n)

N/A

 Biologics

16% (16)

6% (6)

 5ASA

2% (2)

11% (11)

 Immunomodulators

5% (5)

1% (1)

 Steroids

2% (2)

4% (4)

 Others (Antibiotic, Antispasmodic, Anti-diarrheal)

0% (0)

2% (2)

 Combo

11% (11)

15% (15)

 No IBD Related Medication

18% (18)

7% (7)

Disease State (mHI) % (n)

58.5% Active Disease (31)

38.8% Active Disease (19)

N/A

Disease Location

26.4% (14) Small Bowel

2.0% (1) Proctitis

17.0% (9) Large Bowel

69.4% (34) Pancolitis

37.7% (20) Both

12.2% (6) Left-sided

18.9% (10) Unknown

16.3% (8) Unknown

Disease Duration in years, mean (SD)

14.2 (9.8)

16.8 (18.6)

N/A

Quality of Life, mean (SD)

44.4 (12.2)

47.3 (13.1)

N/A

Employed % (n)

43.4% Yes (23)

59.2% Yes (29)

71.6% Yes (73)

Of those employed:

Due to IBD

Due to IBD

Due to IBD caregiving

Absenteeism (Yes/No) last week % (n)

52.2% Yes (12)

27.6% Yes (8)

38.4% Yes (28)

If yes, mean absenteeism hours %

15%

7.1%

9.1%

Of those employed:

Due to IBD

Due to IBD

Due to IBD caregiving

Presenteeism (Likert) % (n)

78.3% Yes (18)

58.6% Yes (17)

57.5% Yes (42)

Mean Presenteeism %

30.6%

27.3%

21.5%

For the entire group:

Due to IBD

Due to IBD

Due to IBD caregiving

Activity Impairment (Likert) % (n)

84.9% Yes (45)

71.4% Yes (35)

52% Yes (53)

Mean Activity Impairment %

38.9%

36.3%

18.7%

Relationship to Patient % (n)

N/A

N/A

55.9% Spouse or Partner (57)

23.5% Parent/Family member (24)

13.7% Child (14)

6.9% Other (7)

Environment % (n)

N/A

N/A

74.5% Living with Patient (76)

25.5% Living separately of Patient (26)

Education Level % (n)

N/A

N/A

77.5% College or Post-College Degree (79)

22.5% College-degree or less (23)

Annual Income level % (n)

N/A

N/A

47.1% $100,000 or more (48)

52.9% Less than $100,000 (54)

Mean Time Spent Caregiving

(hours/week SD)

N/A

N/A

12.2 h (25.4 h)

Mean Duration of Caregiving (SD)

N/A

N/A

8.1 years (8.5)

Chronic Disease % (n)

N/A

N/A

13.7% Yes (14)