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Table 1 Baseline characteristics of survey participants

From: Clinical patient registry recruitment and retention: a survey of patients in two chronic disease registries

 

BRASS (RA)

BrITR (IBD)

n (%) or mean ± SD

Total surveys returned

150 (50.0)a

169 (63.1)a

Sex, female

124 (82.7)

103 (62.0)

Age, years

61.7 ± 12.2

42.9 ± 13.5

  < 45

14 (9.3)

103 (62.1)

 45–64

60 (40.0)

44 (26.5)

 65+

76 (50.7)

19 (11.4)

Race/ethnicity

 White/non-Hispanic

141 (94)

157 (94.6)

 White/Hispanic

3 (2.0)

2 (1.2)

 Black/non-Hispanic

3 (2.0)

7 (4.2)

 Asian

3 (2.0)

1 (0.6)

 Other

3 (2.0)

0 (0.0)

Highest level of education

 High school or below

16 (10.7)

10 (6.0)

 Some college

16 (10.7)

19 (11.4)

 College graduate

62 (41.3)

57 (34.3)

 Beyond college

56 (37.3)

80 (48.2)

SIBDQb

5.3 ± 1.0

EuroQolb

0.8 ± 0.2

  1. aThis percentage refers to the percent of all patients invited from a given registry. bThe Short Inflammatory Bowel Disease Questionnaire is a health-related quality of life tool measuring physical, emotional, and social status. Scoring is 1 (poor) to 7 (excellent) health-related quality of life. The EuroQol (EQ-5D Index) is a standardized instrument used to measure quality of life in five dimensions that include mobility, self-care, usual activities, pain/discomfort, and anxiety/depression. Scoring is on a 0 to 1 scale, with 0 being death and 1 being perfect health. The ellipsis (…) was used when the responses used among the different cohorts were not identical