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United we Stand

Supported by an educational grant from Abbott

Detailed charts & tables


United we Stand


Section A : Firstly, we would like to focus on some details of your experience with IBD.


United we Stand


Overall

Resps

4644

Gender Resps

Male 1542

Female 3086

Not Stated 16

What form of IBD do you have?

EFCCA Overall

Q1:

33.1

62.7

2.3

0.4

1.1

0.4

0.0 20.0 40.0 60.0 80.0 100.0

% Ulcerative colitis

% Crohn’s Disease

% Indeterminate Colitis

% Microscopic/ collagenous colitis

% The diagnosis of my bowel problems is not yet confirmed

% Other

32

38

61

64

50

2

2

13

0

1

0

1

1

0

0

0

0

36

63 2 01033

% Ulcerative colitis % Crohn’s Disease % Indeterminate Colitis % Microscopic/collagenous colitis % Other% The diagnosis of my bowel

problems is not yet confirmed


United we Stand


Resps

<18 yrs 162

19-34 1999

35-54 2012

55+ 463

Resps

Fully employed 2218

Under-employed due to IBD 458

Un-employed due to IBD 387

Student 672

Retired 256

Disabled 649

Seeking disability 181

Unable to receive disability status 324

Other 460

N/ A 193

Resps

Ulcerative colitis 1535

Crohn’s Disease 2914

Indeterminate Colitis 108

Microscopic/ collagenous colitis 18

Not yet confirmed 51

Other 18

Employment and Disability Status

What form of IBD do you have?Q1:

Age Group

33

34

34

65

63

62

62

2

3

2

2

0

0

1

1

1

1

1

1

2

0

0

0

29

28

25

35

26

18

33

24

33

39

59

67

70

60

70

79

63

70

62

56

2

4

3

2

2

2

3

2

1

0

1

0

0

1

0

1

1

1

1

1

0

1

1

1

1

0

1

1

2

0

0

1

1

0

0

1

1

1

0

37

2

% Ulcerative colitis % Crohn’s Disease % Indeterminate Colitis % Microscopic/collagenous colitis % Other% The diagnosis of my bowel

problems is not yet confirmed


United we Stand


Overall

Resps

4619

Gender Resps

Male 1532

Female 3071

Not Stated 16

How long after you first began to notice symptoms (that you now recognise as related to IBD), did it take to receive your final diagnosis?

EFCCA Overall

Q2:

32.1

21.9

12.9

7.6

4.8

3.2

8.9

8.6

0.0 20.0 40.0 60.0 80.0 100.0

% a. Less than 6 months

% b. 6 months - 1 year

% c. Over 1 to 2 years

% d. Over 2 years to 3 years

% e. Over 3 years to 4 years

% f. Over 4 years to 5 years

% g. Over 5 years to 10 years

% h. More than 10 years

31

56

23

21

6

12

13

0

8

7

13

4

5

0

2

4

6

8

9

0

9

8

19

33

22 13 8 5 3 9 932

a. b. c. d. e. f. g. h.


United we Stand


Resps

<18 yrs 160

19-34 1989

35-54 2003

55+ 459

Resps

Fully employed 2209



Student 667

Retired 252

Disabled 644



Other 457

N/ A 193

Resps






Other 18


Type of IBD

Q2:

Age Group

How long after you first began to notice symptoms (that you now recognise as related to IBD), did it take to receive your final diagnosis?

33

32

25

26

25

19

19

13

13

13

13

10

7

7

9

5

5

4

6

3

3

3

4

3

8

10

9

1

4

12

15

40

27

28

39

27

29

31

22

36

37

23

17

24

25

19

19

24

21

21

19

14

14

13

12

12

13

15

10

12

7

11

9

7

11

8

13

7

8

5

5

5

4

5

6

6

2

6

5

5

3

4

4

2

3

4

3

6

3

1

9

11

8

6

9

11

4

11

7

10

7

12

10

3

16

12

11

10

9

11

32

10

26

28

28

8

6

22

22

15

28

23

28

10

15

13

6

6

6

8

10

0

4

22

3

6

2

11

4

0

3

3

6

0

6

0

6

10

10

6

13

22

5

10

16

22

33

17

46

8

a. b. c. d. e. f. g. h.


United we Stand


Overall

Resps

4637

Gender Resps

Male 1539

Female 3082

Not Stated 16

How long after your IBD-related symptoms began did it take for you to first see a specialist (for example, gastroenterologist, nurse, IBD specialist) who was familiar with IBD?

EFCCA Overall

Q3:

48.9

21.1

10.0

5.0

10.3

3.9

0.3

0.5

0.0 20.0 40.0 60.0 80.0 100.0

% a. Less than 6 months

% b. 6 months - 1 year

% c. Over 1 year to 2 years

% d. Over 2 years to 3 years

% e. Over 3 years to 10 years

% f. More than 10 years

% g. I have never seen a gastroenterologist or nurse specialist

% h. Not applicable/ don’t know

47

50

22

21

6

9

11

19

5

5

6

8

11

13

3

4

0

0

0

0

1

0

6

52

21 10 5 10 4 0049

a. b. c. d. e. f. g. h.


United we Stand


Resps

<18 yrs 163

19-34 1995

35-54 2006

55+ 465

Resps

Fully employed 2210



Student 672

Retired 257

Disabled 648



Other 461

N/ A 194

Resps






Other 18

Age Group

How long after your IBD-related symptoms began did it take for you to first see a specialist (for example, gastroenterologist, nurse, IBD specialist) who was familiar with IBD?

Q3:

Type of IBD


49

49

44

19

24

19

20

8

10

9

12

4

4

6

5

5

10

10

11

1

2

6

7

0

0

0

0

0

0

1

0

63

44

44

55

48

42

45

44

52

57

22

19

20

22

17

20

23

18

19

18

11

12

10

9

11

8

13

7

8

5

7

6

5

4

7

6

5

5

4

10

12

13

8

11

12

9

14

11

8

3

5

5

2

6

6

6

4

5

5

0

1

1

0

0

0

1

1

0

1

0

0

0

0

0

1

1

1

1

0

48

12

43

46

39

31

28

20

22

22

28

25

17

7

12

7

6

11

4

6

1

0

2

11

6

13

15

0

12

22

2

5

5

22

14

11

0

0

4

6

8

0

0

1

0

0

0

0

60

8

a. b. c. d. e. f. g. h.


United we Stand


Overall

Resps

4670

Gender Resps

Male 1549

Female 3093

Not Stated 28

Thinking back, how many times did you go to an emergency department or emergency clinic with IBD symptoms before you received a definitive diagnosis?

EFCCA Overall

Q4:

27.8

27.6

11.9

7.9

4.6

3.8

4.4

7.2

4.9

0.0 20.0 40.0 60.0 80.0 100.0

% 0 time

% 1 time

% 2 times

% 3 times

% 4 times

% 5 times

% 6 - 10 times

% More than 10 times

% No answer

% 0 time % 1 time % 2 times % 3 times % 4 times % 5 times % 6 - 10 times% More than 10

times% No answer

28 28 12 8 5 4 4 7 5

29

27

21

28

28

11

12

12

18

9

7

7

5

5

0

4

4

4

4

5

0

7

8

0

4

5

39


United we Stand


Resps

<18 yrs 163

19-34 2000

35-54 2020

55+ 467

Resps

Fully employed 2223



Student 673

Retired 258

Disabled 651



Other 461

N/ A 195

Resps






Other 18


Type of IBD

Thinking back, how many times did you go to an emergency department or emergency clinic with IBD symptoms before you received a definitive diagnosis?

Q4:

Age Group % 0 time % 1 time % 2 times % 3 times % 4 times % 5 times % 6 - 10 times% More than 10

times% No answer

22

25

30

33

26

29

27

26

14

14

10

11

13

8

7

7

7

5

4

4

7

4

4

4

2

5

4

4

6

7

8

6

4

4

5

5

31

23

22

26

28

25

22

26

26

32

27

31

21

26

28

26

22

26

29

24

12

11

12

14

12

11

18

9

12

11

7

7

12

10

8

8

9

10

8

4

5

5

5

5

5

5

5

5

3

5

3

5

6

4

5

6

4

4

3

5

4

6

6

5

4

6

5

5

4

5

7

8

11

6

9

10

8

10

7

6

4

5

4

5

2

4

7

5

7

8

33

25

31

0

35

17

29

27

31

22

10

22

12

12

6

22

16

17

8

8

5

6

16

6

3.3

5.3

4.6

11.1

5.9

0.0

3

4

5

0

2

0

3

5

3

6

0

6

3

9

8

17

14

22

6

4

6

17

2

11


United we Stand


Resps

520

Count

1318

f. I have complications of surgery (for example, adhesions, wound infections, pain)

Q5:

g. I have joint involvement (joint pain or arthritis) associated with IBD

a. I experience side effects from steroids

b. I am concerned about the long-term effects of steroids on my health

c. I have used steroids (e.g. prednisone, prednisolone, cortisone) in the past year for my IBD symptoms

d. I keep steroids (e.g. prednisone, prednisolone, cortisone) on hand to use as necessary in the event of a flare

i. Not applicable/don't know

h. I experience skin involvement (e.g. erythema nodosum, psoriasis, pyoderma gangrenosum or oral sores) associated with IBD

2266

1588

1980

2448

682

1330

Please tick any of the following that apply to you

2289

e. I regularly use pain pills for IBD-related pain

(4670)

42.4

49.0

52.4

28.2

28.5

14.6

48.5

34.0

11.1

0 20 40 60 80 100%


United we Stand


a. I

exp

erie

nce

sid

e ef

fect

s fr

om

ste

roid

s

b. I

am

co

nce

rned

ab

ou

t th

e lo

ng

-ter

m e

ffec

ts o

f st

ero

ids

on

my

hea

lth

c. I

hav

e u

sed

ste

roid

s (e

.g. p

red

nis

on

e,

pre

dn

iso

lon

e, c

ort

iso

ne)

in t

he

pas

t ye

ar f

or

my

IBD

sym

pto

ms

d. I

kee

p s

tero

ids

(e.g

. pre

dn

iso

ne,

pre

dn

iso

lon

e,

cort

iso

ne)

on

han

d t

o u

se a

s n

eces

sary

in t

he

even

t o

f a

flar

e

e. I

reg

ula

rly

use

pai

n p

ills

for

IBD

-rel

ated

pai

n

f. I

hav

e co

mp

licat

ion

s o

f su

rger

y (f

or

exam

ple

, ad

hes

ion

s, w

ou

nd

infe

ctio

ns,

pai

n)

g. I

hav

e jo

int

invo

lvem

ent

(jo

int

pai

n o

r ar

thri

tis)

as

soci

ated

wit

h IB

D

h. I

exp

erie

nce

ski

n in

volv

emen

t (e

.g. e

ryth

ema

no

do

sum

, pso

rias

is, p

yod

erm

a g

ang

ren

osu

m o

r o

ral s

ore

s) a

sso

ciat

ed w

ith

IBD

i. N

ot

app

licab

le/d

on

't k

no

w

Res

ps

Male 38.3 45.3 50.7 29.8 20.8 13.8 43.6 31.4 12.7 1549

Female 44.7 51.1 53.5 27.5 32.4 15.0 51.2 35.5 10.3 3093

Not Stated 17.9 28.6 28.6 17.9 17.9 14.3 21.4 14.3 10.7 28

a. b. c. d. e. f. g. h. i. Resps

<18 yrs 41.7 53.4 57.1 24.5 19.6 8.0 27.6 27.6 16.6 163

19-34 45.4 52.0 57.6 31.0 28.3 12.4 41.3 34.6 11.0 2000

35-54 41.1 48.0 48.7 26.9 29.9 16.7 55.8 33.6 10.5 2020

55+ 36.8 40.9 46.3 24.4 27.2 17.8 56.5 36.4 12.8 467

Age Group

Q5: Please tick any of the following that apply to you

Gender


United we Stand


a. I

exp

erie

nce

sid

e ef

fect

s fr

om

ste

roid

s

b. I

am

co

nce

rned

ab

ou

t th

e lo

ng

-ter

m e

ffec

ts o

f st

ero

ids

on

my

hea

lth

c. I

hav

e u

sed

ste

roid

s (e

.g. p

red

nis

on

e,

pre

dn

iso

lon

e, c

ort

iso

ne)

in t

he

pas

t ye

ar f

or

my

IBD

sym

pto

ms

d. I

kee

p s

tero

ids

(e.g

. pre

dn

iso

ne,

pre

dn

iso

lon

e,

cort

iso

ne)

on

han

d t

o u

se a

s n

eces

sary

in t

he

even

t o

f a

flar

e

e. I

reg

ula

rly

use

pai

n p

ills

for

IBD

-rel

ated

pai

n

f. I

hav

e co

mp

licat

ion

s o

f su

rger

y (f

or

exam

ple

, ad

hes

ion

s, w

ou

nd

infe

ctio

ns,

pai

n)

g. I

hav

e jo

int

invo

lvem

ent

(jo

int

pai

n o

r a

rth

riti

s)

asso

ciat

ed w

ith

IBD

h. I

exp

erie

nce

ski

n in

volv

emen

t (e

.g. e

ryth

ema

no

do

sum

, pso

rias

is, p

yod

erm

a g

ang

ren

osu

m o

r o

ral s

ore

s) a

sso

ciat

ed w

ith

IBD

i. N

ot

app

licab

le/d

on

't k

no

w

Res

ps

Fully employed 38.1 46.5 50.3 26.6 22.9 11.8 43.8 30.8 12.6 2223

Under-employed due to IBD 50.3 54.2 59.9 32.0 39.9 23.5 59.7 41.0 4.8 459

Un-employed due to IBD 56.1 58.4 61.0 34.9 47.8 21.2 61.8 47.3 6.2 387

Student 45.8 52.7 60.3 33.1 25.0 10.4 36.4 31.1 10.7 673

Retired 40.7 41.9 41.1 26.4 29.5 27.9 59.3 36.8 11.6 258

Disabled 55.0 55.3 51.3 33.9 40.1 30.3 68.0 47.0 5.1 651

Seeking disability 53.3 61.4 65.2 35.9 46.2 18.5 62.0 42.4 7.1 184

Unable to receive disability status 49.1 54.3 56.5 33.0 40.1 21.0 65.4 45.7 7.1 324

Other 39.0 46.6 51.6 26.0 22.3 12.8 46.4 31.2 15.2 461

N/ A 31.3 39.5 41.0 26.7 19.5 8.2 43.1 27.2 18.5 195


Ulcerative colitis 46.0 54.6 57.5 35.0 21.8 5.1 41.3 25.7 12.9 1535

Crohn’s Disease 41.0 46.8 50.5 25.1 31.2 20.0 52.4 38.4 9.9 2914

Indeterminate Colitis 49.1 48.1 55.6 26.9 41.7 10.2 49.1 38.9 10.2 108

Microscopic/ collagenous colitis 27.8 50.0 61.1 27.8 38.9 0.0 50.0 22.2 22.2 18

Not yet confirmed 27.5 29.4 33.3 19.6 43.1 11.8 52.9 35.3 23.5 51

Other 22.2 22.2 11.1 11.1 50.0 5.6 38.9 33.3 22.2 18

Please tick any of the following that apply to you

Type of IBD

Q5:



United we Stand


Section B : Health Care


United we Stand


Overall

Resps

4639

Gender Resps

Male 1543

Female 3080

Not Stated 16

How many surgical operations have you had for IBD and IBD-related medical problems?

EFCCA Overall

Q6:

59.9

15.8

8.1

5.3

3.6

5.3

2.0

0.0 20.0 40.0 60.0 80.0 100.0

% 0 (None)

% 1

% 2

% 3

% 4

% 5 - 10

% More than 10

60

44

16

15

13

8

8

6

6

5

13

4

3

19

5

5

6

2

2

0

59

16 8 5 4 5 260

% 0 (None) % 1 % 2 % 3 % 4 % 5 - 10 % More than 10


United we Stand


Resps

<18 yrs 162

19-34 1994

35-54 2011

55+ 464

Resps

Fully employed 2214



Student 670

Retired 257

Disabled 649



Other 459

N/ A 193

Resps






Other 17

Q6:

Age Group

How many surgical operations have you had for IBD and IBD-related medical problems?

Type of IBD


64

55

55

10

15

17

15

7

8

9

6

4

5

5

7

0

3

4

6

1

4

6

7

1

1

3

3

76

49

54

70

42

34

50

52

61

69

16

18

15

14

18

17

17

17

16

13

8

10

9

7

10

11

11

9

4

4

7

7

4

8

10

8

7

5

5

3

5

4

1

5

9

3

3

3

4

3

8

9

3

12

14

8

8

4

4

1

3

3

1

7

7

2

3

2

1

63

7

44

79

94

82

76

5

22

7

0

10

12

3

11

3

0

0

2

7

4

6

0

0

1

5

4

0

0

6

1

8

3

0

0

6

0

3

0

0

4

0

87

4

% 0 (None) % 1 % 2 % 3 % 4 % 5 - 10 % More than 10


United we Stand


Overall

Mean Resps.3.94 1844

Mean Resps NA

3.94 1844 2106

Gender Mean Resps NA

Male 3.96 +0.5 634 685

Female 3.92 -0.4 1201 1416

Not Stated 4.56 +15.7 9 5

Scale : 5 = Very satisfied, 4 = Somewhat satisfied, 3 = Neither satisfied nor dissatisfied, 2 = Somewhat dissatisfied, 1 = Very dissatisfied

% Diff v. Overall

How satisfied are you with the outcomes of your operation(s)?

% Diff v. Overall

EFCCA Overall

Q7:

36.8

36.1

15.8

6.8

4.5

0.0 20.0 40.0 60.0 80.0 100.0

% Very satisfied

% Somewhat satisfied

% Neither satisfied nor dissatisfied

% Somewhat dissatisfied

% Very dissatisfied

73 16 11

% Satisfied % Neither % Dissatisfied

73

72

100

16

16

0

10

12

0


United we Stand


Mean Resps NA

<18 yrs 3.92 -0.4 38 96

19-34 3.87 -1.7 712 1000

35-54 3.97 +0.9 890 826

55+ 4.01 +1.8 201 179

Mean Resps NA

Fully employed 4.03 +2.3 805 1068

Under-employed due to IBD 3.70 -6.1 229 174

Un-employed due to IBD 3.64 -7.5 177 159

Student 3.97 +0.8 204 366

Retired 3.92 -0.5 145 73

Disabled 3.80 -3.4 421 155

Seeking disability 3.78 -4.1 89 61

Unable to receive disability status 3.80 -3.5 151 134

Other 4.02 +2.1 181 215

N/ A 3.95 +0.3 60 103

Mean Resps NA

Ulcerative colitis 3.99 +1.3 205 990

Crohn’s Disease 3.94 +0.0 1594 987

Indeterminate Colitis 3.65 -7.2 23 65

Microscopic/ collagenous colitis 5.00 +27.0 1 14

Not yet confirmed 3.30 -16.2 10 36

Other 3.25 -17.5 4 10

Q7:

Age Group

% Diff v. Overall

% Diff v. Overall

How satisfied are you with the outcomes of your operation(s)?



Type of IBD% Diff v. Overall

74

72

73

76

16

14

18

14

11

14

10

10

76

65

60

77

74

68

65

70

72

73

14

18

21

11

18

20

19

17

20

15

11

17

18

12

11

16

13

8

12

8

72

73

57

100

50

50

17

16

26

0

20

25

11

11

17

0

25

30



United we Stand


Overall

Resps

4670

Gender Resps

Male 1549

Female 3093

Not Stated 28

Over the last 5 years, how many days in total have you been hospitalised because of IBD symptoms? (please type in number of days)

EFCCA Overall

Q8:

15.4

37.5

45.1

2.1

0.0 20.0 40.0 60.0 80.0 100.0

% 0 days

% 1 - 5 days

% 6 - 10 days

% 11 + days

15

50

39

37

32

44

46

18

2

2

0

15

37 45 215

% 0 days % 1 - 5 days % 6 - 10 days % 11 + days


United we Stand


Resps

<18 yrs 163

19-34 2000

35-54 2020

55+ 467

Resps

Fully employed 2223



Student 673

Retired 258

Disabled 651



Other 461

N/ A 195

Resps






Other 18

Type of IBD

Age Group


Over the last 5 years, how many days in total have you been hospitalised because of IBD symptoms? (please type in number of days)Q8:

14

15

18

23

34

42

40

59

50

41

38

1

1

3

3

18

12

13

15

15

11

18

12

14

16

35

47

43

30

50

58

47

44

37

30

48

38

41

54

24

33

41

47

53

1

3

3

1

7

7

3

3

2

1

16

28

11

19

17

10

22

13

52

21

6

16

22

64

34

60

78

56

0

3

0

0

4

0

22

71

% 0 days % 1 - 5 days % 6 - 10 days % 11 + days


United we Stand


Q9 :

Q10 :

Q11 :

Q12 :

Q13 :

Q14 :

* We assume a non-answer to this question means that the respondent has not knowingly taken this group of medication.

Which of the following types of medicine… Other

Which of the following types of medicine… I take something but don't know what it is

Overall

Which of the following types of medicine… Aminosalicylates (5-ASA)

Which of the following types of medicine… Corticosteroids

Which of the following types of medicine… Drugs that affect the immune system

Which of the following types of medicine… 'Biologic' drugs

Overall summary: the types of medicine that are being taken right now or have been taken in the past?

47

21

33

27

20

1

37

58

30

13

11

3

15

22

37

60

68

96

0.0 20.0 40.0 60.0 80.0 100.0

% Taking right now % Taken in the past % No answer


United we Stand


Overall

Resps

4670

Gender Resps

Male 1549

Female 3093

Not Stated 28


EFCCA Overall

Q9:


47.4

37.3

15.3

0.0 20.0 40.0 60.0 80.0 100.0

% Taking right now

% Taken in the past

% No answer

47 37 15

51

46

32

36

38

11

13

16

57



United we Stand


Resps

<18 yrs 163

19-34 2000

35-54 2020

55+ 467

Resps

Fully employed 2223



Student 673

Retired 258

Disabled 651



Other 461

N/A 195

Resps




Microscopic/collagenous colitis 18


Other 18

Type of IBD




Q9:

Age Group

47

45

49

51

27

39

38

33

26

17

12

16

51

43

40

46

46

33

47

46

47

52

35

42

46

33

37

55

40

37

38

32

14

15

15

20

11

13

16

15

16

17

72

35

61

33

39

17

23

46

31

22

18

22

5

19

8

44

61

43



United we Stand


Overall

Resps

4670

Gender Resps

Male 1549

Female 3093

Not Stated 28


EFCCA Overall

Q10:


20.5

57.6

21.8

0.0 20.0 40.0 60.0 80.0 100.0

% Taking right now

% Taken in the past

% No answer

21 58 22

20

21

18

56

59

14

24

21

68



United we Stand


Resps

<18 yrs 163

19-34 2000

35-54 2020

55+ 467

Resps

Fully employed 2223



Student 673

Retired 258

Disabled 651



Other 461

N/A 195

Resps






Other 18

Type of IBD




Q10:

Age Group

23

22

19

20

44

61

59

44

33

17

21

36

18

22

27

22

18

24

26

22

19

18

60

61

58

59

46

62

58

56

59

49

22

17

16

19

14

16

23

23

33

36

25

18

18

28

27

11

55

61

52

50

20

22

21

21

31

22

67

53



United we Stand


Overall

Resps

4670

Gender Resps

Male 1549

Female 3093

Not Stated 28


EFCCA Overall

Q11:


32.6

30.2

37.1

0.0 20.0 40.0 60.0 80.0 100.0

% Taking right now

% Taken in the past

% No answer

33 30 37

31

33

18

30

30

18

39

36

64



United we Stand


Resps

<18 yrs 163

19-34 2000

35-54 2020

55+ 467

Resps

Fully employed 2223



Student 673

Retired 258

Disabled 651



Other 461

N/A 195

Resps






Other 18

Type of IBD




Q11:

Age Group

46

36

31

24

28

32

30

24

26

32

39

52

31

38

36

40

22

31

33

35

32

32

29

31

39

30

27

45

35

32

30

24

40

31

25

29

24

32

33

38

44

51

27

36

31

12

22

24

35

32

8

11

49

29

37

100

67

80



United we Stand


Overall

Resps

4670

Gender Resps

Male 1549

Female 3093

Not Stated 28


EFCCA Overall

Q12:


26.8

13.4

59.8

0.0 20.0 40.0 60.0 80.0 100.0

% Taking right now

% Taken in the past

% No answer

27 13 60

28

27

7

14

13

7

59

60

86



United we Stand


Resps

<18 yrs 163

19-34 2000

35-54 2020

55+ 467

Resps

Fully employed 2223



Student 673

Retired 258

Disabled 651



Other 461

N/A 195

Resps






Other 18

Type of IBD




Q12:

Age Group

23

31

25

18

15

14

14

10

63

55

61

72

26

29

34

28

24

40

34

26

24

18

12

16

15

13

10

22

17

15

14

13

62

55

51

59

38

49

60

62

69

65

12

36

20

2

11

15

15

6

4

11

76

50

65

94

89

94



United we Stand


Overall

Resps

4670

Gender Resps

Male 1549

Female 3093

Not Stated 28


EFCCA Overall

Q13:


20.3

11.3

68.4

0.0 20.0 40.0 60.0 80.0 100.0

% Taking right now

% Taken in the past

% No answer

20 11 68

20

20

14

11

11

7

68

68

79



United we Stand


Resps

<18 yrs 163

19-34 2000

35-54 2020

55+ 467

Resps

Fully employed 2223



Student 673

Retired 258

Disabled 651



Other 461

N/A 195

Resps






Other 18

Type of IBD




Q13:

Age Group

29

20

20

20

7

13

10

9

64

67

70

71

17

25

27

21

25

33

24

23

22

16

11

9

11

12

11

14

14

14

13

10

72

66

61

67

53

62

63

65

74

64

17

22

20

17

25

39

10

12

9

28

14

17

74

66

70

56

44

61



United we Stand


Overall

Resps

4670

Gender Resps

Male 1549

Female 3093

Not Stated 28


EFCCA Overall

Q14:


1.3

2.5

96.2

0.0 20.0 40.0 60.0 80.0 100.0

% Taking right now

% Taken in the past

% No answer

1 3 96

1

1

4

3

2

0

96

97

96



United we Stand


Resps

<18 yrs 163

19-34 2000

35-54 2020

55+ 467

Resps

Fully employed 2223



Student 673

Retired 258

Disabled 651



Other 461

N/A 195

Resps






Other 18

Type of IBD




Q14:

Age Group

4

1

1

1

1

3

2

2

94

96

97

97

2

3

1

1

1

4

3

1

2

2

3

4

3

2

3

4

3

3

3

97

95

94

95

96

92

94

96

96

97

1

1

4

4

3

2

1

4

6

96

96

95

100

94

92



United we Stand


Overall

% Don’t take medication

Resps

6.0 2987

Gender Resps

Male 6.8 1023

Female 5.4 1945

Not Stated 15.8 19

Which of the following types of medicine… I don't take any medications

EFCCA Overall

Q15:

6.0

94.0

0.0 20.0 40.0 60.0 80.0 100.0

% I don’t take medications

% No answer

6 94

% I don’t take medications % No answer

7

5

16

93

95

84



United we Stand



Resps

<18 yrs 6.3 96

19-34 5.8 1296

35-54 6.2 1276

55+ 5.3 304


Resps

Fully employed 5.4 1528

Under-employed due to IBD 9.5 253

Un-employed due to IBD 5.9 253

Student 5.4 441

Retired 6.8 162

Disabled 8.1 395

Seeking disability 5.7 123

Unable to receive disability status 3.5 198

Other 6.8 278

N/ A 11.6 129


Resps

Ulcerative colitis 5.4 1017

Crohn’s Disease 6.0 1826

Indeterminate Colitis 5.5 73

Microscopic/ collagenous colitis 12.5 8

Not yet confirmed 17.5 40

Other 12.5 8

Q15:

Age Group

Which of the following types of medicine… I don't take any medications


Type of IBD

6

6

6

5

94

94

94

95

5

9

6

5

7

8

6

4

7

12

95

91

94

95

93

92

94

96

93

88

5

6

5

13

18

13

95

94

95

88

83

88

% I don’t take medications % No answer


United we Stand


Overall


Mean Resps NA

3.83 3701 0


Male 3.86 +0.9 1226 0

Female 3.81 -0.5 2466 0

Not Stated 4.11 +7.3 9 0

EFCCA Overall

Q16: Overall, how satisfied are you with your current treatment plan for IBD?

% Diff v. Overall


% Diff v. Overall

30.9

39.4

15.8

9.4

4.4

0.0 20.0 40.0 60.0 80.0 100.0

% Very satisfied

% Somewhat satisfied

% Neither satisfied nor dissatisfied

% Somewhat dissatisfied

% Very dissatisfied

70 16 14


72

69

67

15

16

33

12

14

0


United we Stand


Mean Resps NA

<18 yrs 3.87 +1.0 122 0

19-34 3.77 -1.6 1562 0

35-54 3.89 +1.5 1637 0

55+ 3.83 +0.0 375 0

Mean Resps NA

Fully employed 3.94 +2.9 1770 0

Under-employed due to IBD 3.57 -6.8 368 0


Student 3.81 -0.4 512 0

Retired 3.85 +0.4 208 0

Disabled 3.82 -0.2 541 0


Unable to receive disability status 3.47 -9.5 241 0

Other 3.92 +2.3 377 0

N/ A 3.75 -2.0 158 0

Mean Resps NA

Ulcerative colitis 3.76 -1.8 1236 0

Crohn’s Disease 3.91 +2.0 2319 0


Microscopic/ collagenous colitis 3.53 -7.8 15 0


Other 2.92 -23.9 12 0



Overall, how satisfied are you with your current treatment plan for IBD?

Employment and Disability Status% Diff v. Overall

% Diff v. Overall

Q16:

Age Group

75

69

72

69

9

15

16

19

16

16

12

13

74

63

57

71

70

69

56

59

74

64

15

17

14

15

16

17

18

17

15

22

10

20

29

14

14

26

24

11

14

14

67

74

57

53

24

42

18

14

14

27

26

17

15

12

29

20

42

50



United we Stand


About your experience with Health Care Professionals

(4670)

140

4116

694

233

374

As far as you are aware, which of the following types of healthcare professionals are available at the clinic that treats your IBD? (Tick all that apply)

2077

e. I don't have a clinic that treats my IBD over the long-term

f. Other

Q17:

g. Don't know

a. Specialist gastroenterologist

b. Nurse who understands or specialises in IBD

c. Counsellor or psychologist

d. Family/general physician clinic/service or internal medicine doctor

Resps

Count

1063

88.1

44.5

14.9

22.8

8.0

5.0

3.0

0 20 40 60 80 100%


United we Stand



a. S

pec

ialis

t g

astr

oen

tero

log

ist

b. N

urs

e w

ho

un

der

stan

ds

or

spec

ialis

es in

IBD

c. C

ou

nse

llor

or

psy

cho

log

ist

d. F

amily

/gen

eral

ph

ysic

ian

clin

ic/s

ervi

ce o

r in

tern

al m

edic

ine

do

cto

r

e. I

do

n't

hav

e a

clin

ic t

hat

tre

ats

my

IBD

ove

r th

e lo

ng

-ter

m

f. O

ther

g. D

on

't k

no

w

Res

ps

Male 89.5 42.6 15.6 23.2 7.3 5.4 3.1 1549

Female 87.8 45.7 14.6 22.6 8.4 4.8 2.9 3093

Not Stated 42.9 17.9 3.6 14.3 3.6 7.1 7.1 28

a. b. c. d. e. f. g. Resps

<18 yrs 92.0 46.6 35.6 19.6 3.7 7.4 3.7 163

19-34 88.5 47.3 15.9 22.7 7.4 4.8 3.6 2000

35-54 88.3 43.8 13.6 23.3 8.9 5.3 2.4 2020

55+ 87.2 36.2 9.4 23.1 8.6 3.6 3.0 467

Age Group

Q17: As far as you are aware, which of the following types of healthcare professionals are available at the clinic that treats your IBD? (Tick all that apply)

Gender


United we Stand



a. S

pec

ialis

t g

astr

oen

tero

log

ist

b. N

urs

e w

ho

un

der

stan

ds

or

spec

ialis

es in

IBD

c. C

ou

nse

llor

or

psy

cho

log

ist

d. F

amily

/gen

eral

ph

ysic

ian

clin

ic/s

ervi

ce o

r in

tern

al m

edic

ine

do

cto

r

e. I

do

n't

hav

e a

clin

ic t

hat

tre

ats

my

IBD

ove

r th

e lo

ng

-ter

m

f. O

ther

g. D

on

't k

no

w

Res

ps

Fully employed 88.9 44.1 12.6 20.3 7.9 4.5 2.7 2223

Under-employed due to IBD 86.9 50.1 17.9 27.5 7.2 6.3 3.1 459

Un-employed due to IBD 86.8 46.0 16.5 27.6 8.5 7.0 5.4 387

Student 91.1 48.1 22.0 22.7 5.9 5.6 3.3 673

Retired 91.5 38.8 12.4 30.6 8.9 3.1 2.3 258

Disabled 90.0 46.5 23.8 32.3 9.4 7.7 3.1 651

Seeking disability 88.6 42.9 14.7 29.3 9.8 4.9 3.8 184

Unable to receive disability status 80.9 45.1 13.6 26.5 12.7 7.1 2.2 324

Other 85.2 41.6 13.9 23.6 8.5 6.7 3.5 461

N/ A 83.6 32.3 7.7 11.3 13.3 5.6 5.1 195


Ulcerative colitis 89.1 45.1 12.4 18.3 7.8 3.4 2.8 1535

Crohn’s Disease 88.9 45.2 16.3 25.7 7.5 5.7 3.0 2914

Indeterminate Colitis 83.3 43.5 18.5 14.8 13.0 9.3 1.9 108

Microscopic/ collagenous colitis 77.8 22.2 11.1 27.8 16.7 11.1 5.6 18

Not yet confirmed 64.7 23.5 3.9 11.8 23.5 5.9 7.8 51

Other 55.6 11.1 22.2 27.8 33.3 5.6 11.1 18

Type of IBD

Q17:


As far as you are aware, which of the following types of healthcare professionals are available at the clinic that treats your IBD? (Tick all that apply)


United we Stand


Overall

Resps

4643

Gender Resps

Male 1546

Female 3083

Not Stated 14

How often, after an appointment with a gastroenterologist do you wish that he or she should have asked you more probing questions to better understand your disease status?

EFCCA Overall

Q18:

12.3

15.2

14.0

23.1

30.8

4.6

0.0 20.0 40.0 60.0 80.0 100.0

% Always (100% of the time)

% Most of the time (75-99%)

% Much of the time (50-74%)

% Sometimes (25-49%)

% Hardly ever/ Never (less than 25% of the time)

% Not applicable/ don't know

12

7

15

15

21

15

13

14

21

24

14

30

31

21

5

4

21

14

15 14 23 31 512

% Always (100% of the time)% Most of the time (75-

99%)% Much of the time (50-

74%)% Sometimes (25-49%)

% Hardly ever/Never (less than 25% of the time)

% Not applicable/don't know


United we Stand


Resps

<18 yrs 162

19-34 1998

35-54 2014

55+ 462

Resps

Fully employed 2217



Student 672

Retired 257

Disabled 650



Other 458

N/ A 194

Resps






Other 17

Q18:

Age Group

How often, after an appointment with a gastroenterologist do you wish that he or she should have asked you more probing questions to better understand your disease status?

Type of IBD


12

12

15

15

17

14

15

10

15

14

13

18

24

24

16

37

29

32

33

9

4

4

7

12

12

16

12

14

10

18

16

10

18

15

20

22

16

16

16

18

16

13

12

14

16

14

14

17

15

17

11

11

24

23

22

22

18

21

26

24

23

19

32

26

22

31

32

31

20

23

35

34

4

4

4

5

10

5

2

3

7

6

11

11

12

21

22

20

24

16

14

19

22

18

24

15

14

11

11

12

24

23

25

22

14

18

29

32

19

11

24

6

4

5

5

11

10

18

12

14



74%)% Sometimes (25-49%)




United we Stand


Overall

Resps

4616

Gender Resps

Male 1533

Female 3070

Not Stated 13

How often, after an appointment with a gastroenterologist, do you feel you didn't get to tell the doctor something about your IBD that may have been important?

EFCCA Overall

Q19:

5.8

11.7

10.9

25.5

41.2

4.9

0.0 20.0 40.0 60.0 80.0 100.0







6

8

11

12

23

10

11

15

26

25

23

44

40

23

5

5

8

5

12 11 25 41 56



74%)% Sometimes (25-49%)




United we Stand


Resps

<18 yrs 162

19-34 1994

35-54 1998

55+ 455

Resps

Fully employed 2207



Student 671

Retired 249

Disabled 644



Other 458

N/ A 194

Resps






Other 17

Q19:

Age Group

How often, after an appointment with a gastroenterologist, do you feel you didn't get to tell the doctor something about your IBD that may have been important?

Type of IBD


6

6

6

7

13

11

10

7

11

11

11

24

26

25

23

47

40

42

42

11

4

5

7

3

9

9

5

5

5

9

10

4

6

11

15

19

11

6

12

14

15

8

14

11

13

15

9

12

11

15

11

8

25

27

25

27

25

24

29

26

28

21

44

31

30

42

45

43

33

30

43

44

4

5

3

6

9

4

3

3

6

7

5

9

5

13

17

16

12

12

11

16

6

12

12

11

10

17

6

18

26

25

23

39

22

29

40

43

27

6

24

12

4

5

5

28

10

18

6

16



74%)% Sometimes (25-49%)




United we Stand


Overall

% Yes Resps

69.1 4645

Gender % Yes Resps

Male 71.7 1547

Female 67.9 3084

Not Stated 64.3 14

Do you believe that you have adequate access to your IBD professional? For example, can you get an appointment to see your IBD health care professional on a timely basis?

EFCCA Overall

Q20:

Scale : 3 = Yes, 2 = No, 1 = Don't know

69.1

23.7

7.2

0.0 20.0 40.0 60.0 80.0 100.0

% Yes

% No

% Don't know

69 24 7

% Yes % No % Don't know

72

68

64

21

25

14

7

7

21


United we Stand


% Yes Resps

<18 yrs 79.6 162

19-34 67.1 1999

35-54 70.9 2012

55+ 66.5 466

% Yes Resps




Student 69.6 672

Retired 73.9 257

Disabled 74.5 651



Other 70.2 459

N/ A 65.5 194

% Yes Resps






Other 27.8 18

Type of IBD

Do you believe that you have adequate access to your IBD professional? For example, can you get an appointment to see your IBD health care professional on a timely basis?


Age Group

Scale : 3 = Yes, 2 = No, 1 = Don't know

Q20:

80

67

71

67

15

26

22

24

5

7

7

9

71

61

62

70

74

75

67

56

70

65

22

31

31

24

17

22

27

37

21

21

7

7

7

6

4

5

7

8

13

9

68

71

53

56

36

28

23

23

41

33

48

33

8

6

6

11

39

16

% Yes % No % Don't know


United we Stand


Please tick your answer to the following questions about your health care team as appropriate

Resps

Count

148

f. Don't know/Not applicable

Q21:

a. Specialist/gastroenterologist service

b. Family/general physician clinic/service

c. Nurse

d. Counsellor or psychologist

2945

996

506

201

Which professional(s) provides the best range of options to communicate with them (eg telephone, email, drop-in clinic without appointments)? (Tick all that apply)

1638

e. Other

(4670)

63.1

35.1

21.3

3.2

4.3

10.8

0 20 40 60 80 100%


United we Stand



a. S

pec

ialis

t/g

astr

oen

tero

log

ist

serv

ice

b. F

amily

/gen

eral

ph

ysic

ian

clin

ic/s

ervi

ce

c. N

urs

e

d. C

ou

nse

llor

or

psy

cho

log

ist

e. O

ther

f. D

on

't k

no

w/N

ot

app

licab

le

Res

ps

Male 67.0 32.1 17.8 2.3 4.8 9.9 1549

Female 61.4 36.7 23.2 3.6 4.1 11.3 3093

Not Stated 28.6 17.9 14.3 0.0 0.0 7.1 28

a. b. c. d. e. f. Resps

<18 yrs 74.2 30.7 20.9 6.1 5.5 5.5 163

19-34 59.6 35.1 24.0 3.6 4.8 11.3 2000

35-54 65.4 35.3 20.0 2.9 4.2 11.0 2020

55+ 65.5 36.4 16.7 1.7 2.4 10.5 467

Age Group

Q21:Which professional(s) provides the best range of options to communicate with them (eg telephone, email, drop-in clinic without appointments)? (Tick all that apply)

Gender


United we Stand



a. S

pec

ialis

t/g

astr

oen

tero

log

ist

serv

ice

b. F

amily

/gen

eral

ph

ysic

ian

clin

ic/s

ervi

ce

c. N

urs

e

d. C

ou

nse

llor

or

psy

cho

log

ist

e. O

ther

f. D

on

't k

no

w/N

ot

app

licab

le

Res

ps

Fully employed 63.7 32.3 21.4 2.1 3.7 10.9 2223

Under-employed due to IBD 57.5 40.5 24.6 5.0 4.1 10.7 459

Un-employed due to IBD 56.6 42.1 24.3 4.9 7.2 11.9 387

Student 63.3 33.4 24.2 5.2 5.5 9.5 673

Retired 72.1 36.4 15.5 2.3 4.3 7.4 258

Disabled 72.2 43.3 18.4 5.2 7.8 8.0 651

Seeking disability 66.3 33.7 19.6 5.4 5.4 11.4 184

Unable to receive disability status 52.8 40.1 20.7 3.4 6.2 11.1 324

Other 61.4 37.7 20.2 4.6 6.1 12.1 461

N/ A 61.5 27.2 9.7 2.1 6.7 18.5 195


Ulcerative colitis 59.9 30.9 24.0 2.5 3.7 11.4 1535

Crohn’s Disease 66.2 37.3 20.0 3.5 4.5 10.0 2914

Indeterminate Colitis 50.9 34.3 29.6 3.7 2.8 15.7 108

Microscopic/ collagenous colitis 33.3 44.4 0.0 16.7 22.2 27.8 18

Not yet confirmed 31.4 37.3 17.6 0.0 5.9 25.5 51

Other 38.9 44.4 5.6 5.6 11.1 11.1 18

Which professional(s) provides the best range of options to communicate with them (eg telephone, email, drop-in clinic without appointments)? (Tick all that apply)

Type of IBD

Q21:



United we Stand


Resps

Count

95


Q22:



c. Nurse


2494

915

838

159

Which professional(s) is best at returning your calls promptly? (Tick all that apply)

1371

e. Other

(4670)

53.4

29.4

19.6

2.0

3.4

17.9

0 20 40 60 80 100%


United we Stand


a. S

pec

ialis

t/g

astr

oen

tero

log

ist

serv

ice

b. F

amily

/gen

eral

ph

ysic

ian

clin

ic/s

ervi

ce

c. N

urs

e

d. C

ou

nse

llor

or

psy

cho

log

ist

e. O

ther

f. D

on

't k

no

w/N

ot

app

licab

le

Res

ps

Male 55.3 25.1 16.8 1.6 3.9 19.3 1549

Female 52.8 31.6 21.1 2.3 3.2 17.3 3093

Not Stated 14.3 17.9 10.7 0.0 3.6 17.9 28


<18 yrs 65.6 29.4 19.6 6.1 4.9 9.2 163

19-34 51.5 28.5 21.9 2.6 4.0 18.9 2000

35-54 55.0 30.0 18.7 1.6 3.1 17.5 2020

55+ 52.2 31.0 14.6 0.4 1.9 19.1 467

Age Group

Q22: Which professional(s) is best at returning your calls promptly? (Tick all that apply)

Gender


United we Stand


a. S

pec

ialis

t/g

astr

oen

tero

log

ist

serv

ice

b. F

amily

/gen

eral

ph

ysic

ian

clin

ic/s

ervi

ce

c. N

urs

e

d. C

ou

nse

llor

or

psy

cho

log

ist

e. O

ther

f. D

on

't k

no

w/N

ot

app

licab

le

Res

ps

Fully employed 53.6 26.3 19.5 1.0 3.0 18.9 2223



Student 55.3 26.4 23.0 4.6 4.8 16.9 673

Retired 60.5 31.4 14.3 1.9 2.7 16.3 258

Disabled 61.6 36.6 18.1 3.8 5.8 13.7 651



Other 53.4 32.3 19.1 3.3 5.4 16.9 461

N/ A 51.8 22.1 8.7 2.1 3.6 29.7 195



Crohn’s Disease 56.5 32.0 19.1 2.2 3.8 15.7 2914




Other 38.9 38.9 0.0 5.6 5.6 11.1 18

Which professional(s) is best at returning your calls promptly? (Tick all that apply)

Type of IBD

Q22:



United we Stand


Resps

Count

223


Q23:



c. Nurse


3029

924

498

176

Which professional(s) is best at giving you sufficient time, without rushing you through your consultation? (Tick all that apply)

1631

e. Other

(4670)

64.9

34.9

19.8

4.8

3.8

10.7

0 20 40 60 80 100%


United we Stand


a. S

pec

ialis

t/g

astr

oen

tero

log

ist

serv

ice

b. F

amily

/gen

eral

ph

ysic

ian

clin

ic/s

ervi

ce

c. N

urs

e

d. C

ou

nse

llor

or

psy

cho

log

ist

e. O

ther

f. D

on

't k

no

w/N

ot

app

licab

le

Res

ps

Male 69.5 31.8 17.9 3.9 2.9 10.8 1549

Female 62.9 36.6 20.8 5.3 4.2 10.6 3093

Not Stated 28.6 21.4 7.1 0.0 3.6 10.7 28


<18 yrs 77.3 36.2 22.1 11.0 3.7 8.0 163

19-34 61.8 33.0 21.8 5.6 3.6 11.6 2000

35-54 66.1 36.8 19.0 4.2 4.4 10.3 2020

55+ 70.0 36.0 14.6 1.9 1.9 9.2 467

Age Group

Q23: Which professional(s) is best at giving you sufficient time, without rushing you through your consultation? (Tick all that apply)

Gender


United we Stand


a. S

pec

ialis

t/g

astr

oen

tero

log

ist

serv

ice

b. F

amily

/gen

eral

ph

ysic

ian

clin

ic/s

ervi

ce

c. N

urs

e

d. C

ou

nse

llor

or

psy

cho

log

ist

e. O

ther

f. D

on

't k

no

w/N

ot

app

licab

le

Res

ps

Fully employed 66.8 31.8 19.2 3.0 3.4 10.1 2223



Student 66.4 33.3 23.3 7.6 3.6 11.4 673

Retired 72.1 33.3 15.5 4.3 3.1 7.8 258

Disabled 68.0 42.5 18.1 8.6 6.5 8.1 651



Other 65.5 37.5 19.3 5.9 5.6 11.3 461

N/ A 67.7 31.3 12.8 3.1 5.6 14.9 195



Crohn’s Disease 67.5 37.4 19.5 5.2 4.0 9.8 2914




Other 38.9 50.0 0.0 11.1 11.1 5.6 18

Which professional(s) is best at giving you sufficient time, without rushing you through your consultation? (Tick all that apply)

Type of IBD

Q23:



United we Stand


Resps

Count

383


Q24:



c. Nurse


2817

880

655

279

Which professional(s) do you feel best understands the full picture of how IBD impacts your life - not just the medical problem? (Tick all that apply)

1314

e. Other

(4670)

60.3

28.1

18.8

8.2

6.0

14.0

0 20 40 60 80 100%


United we Stand


a. S

pec

ialis

t/g

astr

oen

tero

log

ist

serv

ice

b. F

amily

/gen

eral

ph

ysic

ian

clin

ic/s

ervi

ce

c. N

urs

e

d. C

ou

nse

llor

or

psy

cho

log

ist

e. O

ther

f. D

on

't k

no

w/N

ot

app

licab

le

Res

ps

Male 65.1 27.4 17.0 7.4 5.2 13.0 1549

Female 58.2 28.7 19.9 8.6 6.4 14.5 3093

Not Stated 28.6 10.7 7.1 3.6 3.6 10.7 28


<18 yrs 69.3 23.3 22.1 14.1 8.0 10.4 163

19-34 58.0 24.6 20.5 9.8 6.5 15.0 2000

35-54 61.7 31.4 18.2 7.2 5.6 13.6 2020

55+ 63.0 31.7 14.1 3.9 4.7 13.5 467

Age Group

Q24: Which professional(s) do you feel best understands the full picture of how IBD impacts your life - not just the medical problem? (Tick all that apply)

Gender


United we Stand


a. S

pec

ialis

t/g

astr

oen

tero

log

ist

serv

ice

b. F

amily

/gen

eral

ph

ysic

ian

clin

ic/s

ervi

ce

c. N

urs

e

d. C

ou

nse

llor

or

psy

cho

log

ist

e. O

ther

f. D

on

't k

no

w/N

ot

app

licab

le

Res

ps

Fully employed 63.5 25.7 18.8 6.0 5.6 12.8 2223



Student 60.0 22.6 21.0 11.4 5.6 15.3 673

Retired 68.6 34.1 16.3 7.0 5.4 10.1 258

Disabled 64.2 38.1 17.4 14.1 7.4 10.6 651



Other 59.0 26.5 16.9 11.3 8.7 15.4 461

N/ A 60.5 25.1 8.2 5.6 6.7 22.6 195



Crohn’s Disease 61.9 30.9 18.6 8.7 6.2 13.5 2914




Other 27.8 38.9 0.0 11.1 16.7 22.2 18

Which professional(s) do you feel best understands the full picture of how IBD impacts your life - not just the medical problem? (Tick all that apply)

Type of IBD

Q24:



United we Stand


Section C : The IMPACT that IBD has on YOUR Life


United we Stand


Overall

Resps

4651

Gender Resps

Male 1548

Female 3088

Not Stated 15

What is the current state of your IBD disease?

EFCCA Overall

Q25:

50.3

24.6

22.5

2.6

0.0 20.0 40.0 60.0 80.0 100.0

% In remission/ not flaring

% Chronically active

% Active periodic flare-up


49

27

23

25

33

22

23

27

2

3

13

53

25 22 350

% In remission/not flaring % Chronically active % Active periodic flare-up % Not applicable/don't know


United we Stand


Resps

<18 yrs 163

19-34 1997

35-54 2019

55+ 465

Resps

Fully employed 2221



Student 672

Retired 258

Disabled 651



Other 461

N/ A 194

Resps






Other 18

Type of IBD

Age Group


What is the current state of your IBD disease?Q25:

50

52

46

27

24

25

26

23

23

21

25

4

3

2

3

47

42

36

49

44

45

41

39

55

54

20

32

37

27

30

36

36

28

22

22

23

22

25

21

17

20

30

19

20

3

3

2

2

2

2

3

3

4

4

55

24

51

47

22

18

33

20

26

26

44

34

44

26

20

25

33

22

3

2

2

0

8

0

50

40

% In remission/not flaring % Chronically active % Active periodic flare-up % Not applicable/don't know


United we Stand


Overall

Resps

4602

Gender Resps

Male 1527

Female 3060

Not Stated 15

When was your last flare (before this one if you are currently experiencing one)?

EFCCA Overall

Q26:

17.9

16.8

13.7

15.8

29.9

5.8

0.0 20.0 40.0 60.0 80.0 100.0

% Less than a month ago

% Over 1 month to 3 months ago

% Over 3 months to 6 months ago

% Over 6 months to12 months ago

% More than 12 months ago


18

20

18

16

27

13

14

7

16

16

7

30

30

27

5

6

13

18

17 14 16 30 618

% Less than a month ago% Over 1 month to 3

months ago% Over 3 months to 6

months ago% Over 6 months to12

months ago% More than 12 months ago % Not applicable/don't know


United we Stand


Resps

<18 yrs 162

19-34 1996

35-54 1987

55+ 449

Resps

Fully employed 2196



Student 670

Retired 252

Disabled 640



Other 457

N/ A 191

Resps






Other 18

Q26:

Age Group

When was your last flare (before this one if you are currently experiencing one)?

Type of IBD


19

17

19

20

18

16

14

18

15

12

14

19

17

15

13

18

26

34

33

4

5

6

7

21

18

28

20

20

19

22

22

19

17

17

21

19

18

10

15

16

24

16

16

14

13

13

15

12

14

15

12

13

16

16

15

17

14

15

16

13

15

14

33

27

19

24

33

32

23

19

33

35

5

5

7

5

10

8

8

7

5

6

15

13

18

25

29

40

44

20

15

19

29

18

6

15

13

16

18

17

16

15

17

12

10

11

28

32

21

0

10

11

5

7

3

12

8

11

17

14

% Less than a month ago% Over 1 month to 3

months ago% Over 3 months to 6

months ago% Over 6 months to12

months ago% More than 12 months ago % Not applicable/don't know


United we Stand


Overall

Resps

4624

Gender Resps

Male 1539

Female 3070

Not Stated 15

How many flare-ups would you say you have experienced in the last two years?

EFCCA Overall

Q27:

13.1

15.8

14.9

11.4

8.9

5.9

4.9

5.3

4.7

15.1

0.0 20.0 40.0 60.0 80.0 100.0

% 0 (None)

% 1

% 2

% 3

% 4

% 5

% 6

% 7 - 10

% More than10

% My condition is always (chronically) actively flaring

% 0 (None) % 1 % 2 % 3 % 4 % 5 % 6 % 7 - 10 % More than10% My condition is always (chronically) actively

flaring

13

20

17

15

27

15

15

7

12

11

7

8

9

7

6

6

0

5

5

0

6

5

0

5

5

13

12

17

20

14

16 15 11 9 6 5 5 5 1513


United we Stand


Resps

<18 yrs 163

19-34 1988

35-54 2009

55+ 456

Resps

Fully employed 2209



Student 668

Retired 252

Disabled 641



Other 457

N/ A 194

Resps






Other 18


Type of IBD

Q27:

Age Group

How many flare-ups would you say you have experienced in the last two years?

10

15

16

17

16

17

12

15

16

14

16

15

12

11

12

8

10

8

8

6

6

6

4

4

5

5

5

4

5

5

5

4

5

5

5

15

15

15

16

12

8

5

10

19

13

7

7

15

16

17

13

11

19

13

12

12

5

16

16

16

12

14

15

12

15

12

17

15

12

13

9

12

10

10

14

14

11

14

10

8

10

10

7

7

5

11

9

8

6

9

5

5

4

6

4

6

5

6

5

5

4

5

3

4

4

7

4

4

5

6

7

6

4

7

6

6

5

5

4

6

7

5

4

4

7

8

4

3

10

21

28

14

23

24

26

23

15

12

15

14

15

7

2

6

17

16

8

6

10

6

16

14

16

22

6

13

11

18

0

4

11

10

8

7

6

8

11

6

6

6

11

4

11

6

4

3

11

10

0

6

5

6

6

4

0

4

5

6

11

6

11

12

16

21

28

36

39

10

16

% 0 (None) % 1 % 2 % 3 % 4 % 5 % 6 % 7 - 10 % More than10% My condition is always (chronically) actively

flaring


United we Stand


Overall

Resps

4637

Gender Resps

Male 1542

Female 3083

Not Stated 12

During your current or most recent flare, how often do/did you have to cancel or reschedule an engagement, meeting, etc. because of your IBD? (select the option that most closely represents your own experience)

The effect on you of an active flare/ chronically active flare

EFCCA Overall

Q28:

11.9

22.0

19.5

21.1

21.7

3.9

0.0 20.0 40.0 60.0 80.0 100.0







12

21

23

25

18

20

42

21

21

17

25

20

17

5

4

0

11

22 19 21 22 412



74%)% Sometimes (25-49%)




United we Stand


Resps

<18 yrs 162

19-34 1996

35-54 2009

55+ 466

Resps

Fully employed 2214



Student 672

Retired 257

Disabled 648



Other 460

N/ A 195

Resps






Other 18

Q28:

Age Group

The effect on you of an active flare/ chronically active flare

During your current or most recent flare, how often do/did you have to cancel or reschedule an engagement, meeting, etc. because of your IBD? (select the option that most closely represents your own experience)

Type of IBD


11

13

10

22

26

19

16

13

21

18

20

20

20

23

20

19

19

23

29

12

3

4

5

14

13

25

12

10

15

25

15

10

6

19

26

33

23

17

27

28

33

23

15

17

27

23

20

21

27

24

17

19

23

21

13

21

18

18

13

17

21

27

28

10

6

20

32

15

4

9

24

24

3

2

2

4

5

3

2

2

6

9

10

18

12

12

17

20

28

20

23

26

28

14

28

19

19

24

11

17

21

21

16

28

20

11

25

20

20

11

10

17

3

4

2

6

10

0

11

26



74%)% Sometimes (25-49%)




United we Stand


Overall

Resps

4361

Gender Resps

Male 1453

Female 2894

Not Stated 14

During your current or most recent flare, how many days in a week do/did you experience bleeding from your gastrointestinal tract? (select the option that most closely represents your own experience)

EFCCA Overall

Q29:

38.8

8.5

9.1

8.1

5.7

5.3

2.8

21.8

0.0 20.0 40.0 60.0 80.0 100.0

% 0 day

% 1 day

% 2 days

% 3 days

% 4 days

% 5 days

% 6 days

% 7 days

% 0 day % 1 day % 2 days % 3 days % 4 days % 5 days % 7 days% 6 days

39 9 8.1 6 5 3 228

38

39

36

9

7

9

9

7

7.9

8.1

14.3

6

5

14

6

5

7

4

2

0

21

22

14

8


United we Stand


Resps

<18 yrs 142

19-34 1893

35-54 1890

55+ 430

Resps

Fully employed 2116



Student 622

Retired 244

Disabled 610



Other 424

N/ A 180

Resps






Other 18


Type of IBD

During your current or most recent flare, how many days in a week do/did you experience bleeding from your gastrointestinal tract? (select the option that most closely represents your own experience)

Q29:

Age Group

42

34

41

46

8

9

6

7

9

9

11

8

9

8

8

4

7

5

6

8

6

4

3

3

3

2

3

18

23

22

18

10

38

37

38

34

53

45

34

43

41

41

9

10

9

6

10

7

5

9

9

9

11

10

8

10

10

7

9

7

7

9

8

7

8

5

8

14

7

7

7

5

6

6

6

6

5

5

7

6

8

5

7

5

7

2

6

6

3

7

4

3

2

2

3

3

3

2

3

2

3

23

19

22

24

14

14

25

22

21

21

8

12

52

26

50

50

50

10

8

28

10

6

7

10

9

17

6

22

9

7

10

6

10

0

7

5

6

0

2

6

9

4

7

0

4

6

5

2

2

0

2

0

46

10

32

0

15

11

5



United we Stand


Overall

Resps

4216

Gender Resps

Male 1441

Female 2762

Not Stated 13

During your current or most recent flare, how many days in a week do/did you experience cramping pain in your abdomen? (select the option that most closely represents your own experience)

EFCCA Overall

Q30:

13.1

7.5

9.4

10.7

8.1

9.3

4.4

37.4

0.0 20.0 40.0 60.0 80.0 100.0

% 0 day

% 1 day

% 2 days

% 3 days

% 4 days

% 5 days

% 6 days

% 7 days


13 9 10.7 8 9 4 377

17

11

15

7

8

11

8

0

11.1

10.5

7.7

9

8

8

9

10

0

4

5

15

31

41

46

8


United we Stand


Resps

<18 yrs 139

19-34 1822

35-54 1824

55+ 425

Resps

Fully employed 2080



Student 603

Retired 237

Disabled 567



Other 416

N/ A 171

Resps






Other 16

Q30:

Age Group

During your current or most recent flare, how many days in a week do/did you experience cramping pain in your abdomen? (select the option that most closely represents your own experience)

Type of IBD


17

10

13

24

5

9

11

9

9

9

13

14

11

10

11

5

8

8

7

10

10

9

9

6

5

4

3

34

42

36

22

5

15

6

6

13

25

12

11

7

14

12

7

3

5

11

5

4

4

9

8

9

10

5

8

14

10

6

8

10

16

10

10

11

12

12

10

8

10

9

13

8

7

10

9

5

8

12

9

8

7

9

11

13

9

8

11

13

10

9

8

5

4

4

4

5

5

6

3

3

5

35

45

48

39

20

39

42

50

38

30

9

17

11

7

13

6

6

8

7

6

4

13

8

10

8

19

4

6

11

11

16

6

13

0

7

9

8

19

11

13

10

9

8

0

6

19

4

5

1

0

0

6

36

38

44

38

55

38

7



United we Stand


Overall

Resps

3996

Gender Resps

Male 1380

Female 2604

Not Stated 12

During your current or most recent flare, how many days in a week do/did you feel tired, weak or worn out? (select the option that most closely represents your own experience)

EFCCA Overall

Q31:

4.4

2.7

5.7

6.8

6.6

9.8

5.9

58.1

0.0 20.0 40.0 60.0 80.0 100.0

% 0 day

% 1 day

% 2 days

% 3 days

% 4 days

% 5 days

% 6 days

% 7 days


4 6 6.8 7 10 6 583

6

3

8

3

0

7

5

0

7.8

6.3

8.3

8

6

0

11

9

0

7

5

0

51

62

83

3


United we Stand


Resps

<18 yrs 137

19-34 1737

35-54 1712

55+ 404

Resps

Fully employed 1990



Student 586

Retired 218

Disabled 530



Other 387

N/ A 166

Resps






Other 15


Type of IBD

During your current or most recent flare, how many days in a week do/did you feel tired, weak or worn out? (select the option that most closely represents your own experience)

Q31:

Age Group

8

3

4

8

2

3

4

5

4

6

9

9

6

6

12

5

7

6

7

11

10

10

7

7

8

4

4

51

60

59

48

4

5

2

1

4

8

2

1

1

5

7

1

1

3

4

2

1

0

4

3

7

4

2

6

13

4

2

3

6

7

7

6

3

7

15

6

5

5

8

8

7

5

6

7

6

6

6

8

8

7

11

9

6

10

6

10

12

9

9

10

6

6

6

6

5

8

8

4

6

5

55

67

76

55

43

63

64

70

55

53

3

6

4

4

0

2

0

2

4

7

2

0

5

6

8

0

4

13

6

7

13

13

9

0

6

7

2

7

7

7

10

9

9

20

16

20

6

6

2

7

2

7

58

58

58

47

58

53

3



United we Stand


Overall

Resps

4210

Gender Resps

Male 1433

Female 2765

Not Stated 12

During your current or most recent flare, how many days in a week do/did you feel a sudden, uncontrollable urge for a bowel movement? (select the option that most closely represents your own experience)

EFCCA Overall

Q32:

11.1

7.0

9.3

9.4

8.4

9.6

5.0

40.1

0.0 20.0 40.0 60.0 80.0 100.0

% 0 day

% 1 day

% 2 days

% 3 days

% 4 days

% 5 days

% 6 days

% 7 days


11 9 9.4 8 10 5 407

13

10

8

6

0

9

9

8

10.0

9.1

8.3

8

8

8

9

10

8

5

5

0

38

41

58

8


United we Stand


Resps

<18 yrs 147

19-34 1830

35-54 1807

55+ 420

Resps

Fully employed 2057



Student 612

Retired 229

Disabled 564



Other 413

N/ A 177

Resps






Other 16


Type of IBD

During your current or most recent flare, how many days in a week do/did you feel a sudden, uncontrollable urge for a bowel movement? (select the option that most closely represents your own experience)

Q32:

Age Group

22

10

11

12

7

7

9

8

9

9

11

9

9

10

8

8

9

8

7

9

10

10

10

4

6

4

6

31

40

41

39

9

11

9

7

16

14

11

6

5

14

6

5

4

7

10

3

5

5

6

7

9

11

8

9

9

7

5

7

10

10

11

8

5

9

8

8

6

6

9

12

8

9

8

8

8

7

9

11

8

7

9

12

11

10

10

10

10

13

10

11

5

6

5

6

5

6

6

5

5

7

39

42

52

35

37

47

54

48

38

39

8

6

14

4

7

10

19

7

9

7

6

19

7

11

3

0

13

6

9

10

8

21

8

6

7

9

14

21

13

13

10

10

8

0

8

13

4

5

6

0

6

0

50

35

46

43

35

25

6



United we Stand


Overall

Resps

4638

Gender Resps

Male 1543

Female 3082

Not Stated 13

During your current or most recent flare, how many runny stools or episodes of diarrhoea do/did you experience in the course of a typical day? (select the option that most closely represents your own experience)

EFCCA Overall

Q33:

7.3

11.6

24.3

35.6

11.0

8.7

1.5

0.0 20.0 40.0 60.0 80.0 100.0

% Did not experience

% 1-2 times a day

% 3-4 times a day

% 5-10 times a day

% 11-15 times a day

% More than 15 times a day

% NA/ don't know

7

15

10

25

24

23

33

37

54

11

11

8

6

10

0

1

1

15

8

12 24 36 11 9 17

% Did not experience % 1-2 times a day % 3-4 times a day % 5-10 times a day % 11-15 times a day% More than 15 times a

day% NA/don't know


United we Stand


Resps

<18 yrs 161

19-34 1998

35-54 2009

55+ 464

Resps

Fully employed 2214



Student 671

Retired 256

Disabled 646



Other 459

N/ A 193

Resps






Other 18

Age Group

During your current or most recent flare, how many runny stools or episodes of diarrhoea do/did you experience in the course of a typical day? (select the option that most closely represents your own experience)

Q33:

Type of IBD


7

7

7

18

12

11

11

24

25

23

26

29

36

36

35

7

11

12

11

4

8

10

8

2

1

2

2

15

5

3

11

5

5

2

3

10

6

13

8

8

14

13

7

8

9

9

15

26

20

19

23

18

19

21

26

31

35

40

39

34

29

37

39

46

35

31

10

13

13

10

11

15

16

11

11

10

7

11

17

6

11

15

14

10

7

6

1

2

1

1

4

3

2

1

3

2

8

28

8

6

6

4

17

12

12

13

6

12

11

22

26

15

22

22

36

35

38

28

34

39

14

10

10

33

10

6

11

8

15

6

4

6

1

2

3

0

2

0

6

34


day% NA/don't know


United we Stand


Overall

Resps

4614

Gender Resps

Male 1531

Female 3068

Not Stated 15

In between flares, my life is still significantly negatively impacted by symptoms of IBD compared to people without IBD.

EFCCA Overall

Q34:

24.6

24.0

39.0

12.4

0.0 20.0 40.0 60.0 80.0 100.0

% Significantly affected

% Somewhat affected

% Slightly unaffected

% Very unaffected

25

33

25

24

27

37

40

20

14

12

20

24

24 39 1225

% Significantly affected % Somewhat affected % Slightly unaffected % Very unaffected


United we Stand


Resps

<18 yrs 159

19-34 1984

35-54 2004

55+ 460

Resps

Fully employed 2204



Student 666

Retired 255

Disabled 643



Other 455

N/ A 191

Resps






Other 18

Type of IBD

Age Group


In between flares, my life is still significantly negatively impacted by symptoms of IBD compared to people without IBD.Q34:

24

25

28

27

23

25

22

35

41

38

33

18

11

12

17

21

31

45

23

28

35

48

36

22

14

21

34

32

22

24

30

30

35

22

28

46

31

20

39

28

17

24

40

37

14

3

3

16

16

6

5

4

16

21

19

33

25

28

33

30

39

23

24

26

33

32

28

39

39

35

28

6

14

12

11

6

8

28

24

30

% Significantly affected % Somewhat affected % Slightly unaffected % Very unaffected


United we Stand


Overall

Resps

4582

Gender Resps

Male 1519

Female 3052

Not Stated 11

During your current or most recent period NOT experiencing a flare, how often do/did you have to cancel or reschedule an engagement, meeting, etc. because of your bowel disease?

Non-flare

EFCCA Overall

Q35:

1.7

4.5

9.0

22.3

56.3

6.3

0.0 20.0 40.0 60.0 80.0 100.0







2

4

4

8

9

9

21

23

36

58

56

45

7

6

9

2

4 9 22 56 62


99%)% Much of the time (50-74%) % Sometimes (25-49%) % Hardly ever/Never (less than 25%

of the time)% Not applicable/don't

know


United we Stand


Resps

<18 yrs 161

19-34 1979

35-54 1986

55+ 452

Resps

Fully employed 2193



Student 667

Retired 251

Disabled 644



Other 454

N/ A 186

Resps






Other 18


Type of IBD

During your current or most recent period NOT experiencing a flare, how often do/did you have to cancel or reschedule an engagement, meeting, etc. because of your bowel disease?

Q35:

Age Group

Non-flare

2

2

2

6

4

5

6

9

8

9

10

19

22

23

22

52

59

55

51

10

5

6

9

4

2

4

2

1

3

3

3

2

2

5

11

4

6

7

13

8

4

3

6

12

20

8

15

14

19

7

8

18

31

34

18

21

30

31

33

23

21

66

47

28

61

48

39

35

34

58

54

6

2

3

7

8

6

4

3

7

14

15

2

3

2

6

4

4

7

11

6

11

7

10

10

11

6

20

23

23

22

19

17

61

55

51

33

48

61

6

6

6

22

15

0

2

10


99%)% Much of the time (50-74%) % Sometimes (25-49%)




United we Stand


Overall

Resps

4524

Gender Resps

Male 1495

Female 3019

Not Stated 11

During your current or most recent period NOT experiencing a flare, how many days in a week do/did you experience bleeding from your gastrointestinal tract? (select the option that most closely represents your own experience)

EFCCA Overall

Q36:

72.1

11.7

5.9

3.4

1.6

1.2

0.5

3.5

0.0 20.0 40.0 60.0 80.0 100.0

% 0 day

% 1 day

% 2 days

% 3 days

% 4 days

% 5 days

% 6 days

% 7 days


72 6 3.4 2 10 312

70

73

55

11

18

7

6

0

3.4

3.4

9.1

2

1

18

1

1

0

1

0

0

4

3

0

12


United we Stand


Resps

<18 yrs 155

19-34 1952

35-54 1965

55+ 448

Resps

Fully employed 2175



Student 654

Retired 244

Disabled 626



Other 448

N/ A 186

Resps






Other 18


Type of IBD

During your current or most recent period NOT experiencing a flare, how many days in a week do/did you experience bleeding from your gastrointestinal tract? (select the option that most closely represents your own experience)

Q36:

Age Group

70

72

73

70

14

10

9

6

6

5

8

5

3

4

4

1

2

2

1

1

1

1

1

1

0

0

1

3

3

4

4

12

74

71

62

72

75

70

65

68

77

68

13

12

14

9

11

14

12

8

12

5

6

7

5

8

7

3

9

4

9

3

2

6

3

2

4

5

3

4

6

1

2

2

1

2

2

2

2

2

1

1

2

2

1

1

2

5

3

1

0

0

0

1

0

1

1

1

1

0

0

3

4

7

2

2

3

6

2

4

4

12

66

75

62

83

84

78

11

13

17

10

6

7

5

7

0

2

11

4

3

6

0

0

0

2

1

3

0

2

0

2

1

3

0

0

0

1

0

1

0

0

0

6

2

6

0

2

6

12



United we Stand


Overall

Resps

4435

Gender Resps

Male 1477

Female 2947

Not Stated 12

During your current or most recent period NOT experiencing a flare, how many days in a week do/did you experience cramping pain in your abdomen? (select the option that most closely represents your own experience)

EFCCA Overall

Q37:

37.6

20.0

14.4

9.7

4.6

3.9

1.6

8.2

0.0 20.0 40.0 60.0 80.0 100.0

% 0 day

% 1 day

% 2 days

% 3 days

% 4 days

% 5 days

% 6 days

% 7 days


38 14 9.7 5 4 2 820

43

35

17

20

33

13

15

17

8.3

10.5

0.0

4

5

8

3

5

0

1

2

0

7

9

25

20


United we Stand


Resps

<18 yrs 152

19-34 1920

35-54 1917

55+ 441

Resps

Fully employed 2149



Student 644

Retired 244

Disabled 612



Other 438

N/ A 181

Resps






Other 17


Type of IBD

During your current or most recent period NOT experiencing a flare, how many days in a week do/did you experience cramping pain in your abdomen? (select the option that most closely represents your own experience)

Q37:

Age Group

36

35

38

45

22

19

15

14

15

14

14

11

10

9

7

4

4

5

6

4

4

4

4

2

2

2

1

8

8

9

8

21

44

26

21

39

44

30

27

25

38

39

16

15

21

20

18

22

15

19

18

13

21

16

14

12

13

11

19

16

14

8

12

14

11

8

13

11

13

7

14

4

5

7

5

6

5

5

6

5

6

3

7

6

4

1

5

8

5

4

4

1

2

5

1

1

3

3

1

2

1

6

12

16

5

8

12

13

14

9

5

22

45

35

25

17

31

24

21

19

17

22

29

13

14

23

33

16

12

9

10

8

6

10

12

4

5

8

22

4

6

4

4

6

0

2

6

1

2

2

0

0

0

6

9

9

6

14

12

18



United we Stand


Overall

Resps

4262

Gender Resps

Male 1439

Female 2812

Not Stated 12

During your current or most recent period NOT experiencing a flare, how many days in a week do/did you feel tired, weak or worn out? (select the option that most closely represents your own experience)

EFCCA Overall

Q38:

16.6

12.8

14.5

12.7

9.0

8.8

3.9

21.6

0.0 20.0 40.0 60.0 80.0 100.0

% 0 day

% 1 day

% 2 days

% 3 days

% 4 days

% 5 days

% 6 days

% 7 days


17 15 12.7 9 9 4 2213

21

14

8

12

8

14

15

8

12.5

12.8

8.3

9

9

17

8

9

8

4

4

8

18

23

33

14


United we Stand


Resps

<18 yrs 150

19-34 1859

35-54 1826

55+ 423

Resps

Fully employed 2087



Student 627

Retired 231

Disabled 572



Other 419

N/ A 177

Resps






Other 16


Type of IBD

During your current or most recent period NOT experiencing a flare, how many days in a week do/did you feel tired, weak or worn out? (select the option that most closely represents your own experience)

Q38:

Age Group

26

15

17

20

15

12

9

14

15

14

14

17

14

12

10

3

10

8

9

11

9

9

7

5

4

4

5

12

18

25

26

13

20

7

5

19

19

8

9

6

17

27

7

5

16

10

8

9

5

15

6

16

14

12

18

19

11

14

12

13

13

13

14

13

13

14

14

12

15

12

10

8

10

9

9

9

10

9

12

9

8

8

12

9

8

5

10

11

11

8

11

3

7

5

4

2

6

6

5

5

5

17

30

42

14

22

34

30

34

21

20

16

22

14

10

6

13

6

12

16

6

10

6

13

15

13

25

19

25

11

14

12

25

6

19

8

10

8

6

8

19

8

9

10

13

8

6

4

4

6

6

4

0

19

23

26

13

31

19

15



United we Stand


Overall

Resps

4460

Gender Resps

Male 1491

Female 2960

Not Stated 10

During your current or most recent period NOT experiencing a flare, how many days in a week do/did you feel you a sudden, uncontrollable urge for a bowel movement? (select the option that most closely represents your own experience)

EFCCA Overall

Q39:

34.4

21.2

13.3

9.2

5.0

4.1

2.1

10.7

0.0 20.0 40.0 60.0 80.0 100.0

% 0 day

% 1 day

% 2 days

% 3 days

% 4 days

% 5 days

% 6 days

% 7 days


34 13 9.2 5 4 2 1121

35

34

20

21

20

12

14

10

10

9

0

6

5

10

3

4

10

2

2

10

11

11

20

22


United we Stand


Resps

<18 yrs 156

19-34 1932

35-54 1928

55+ 440

Resps

Fully employed 2158



Student 648

Retired 244

Disabled 610



Other 441

N/ A 182

Resps






Other 17


Type of IBD

During your current or most recent period NOT experiencing a flare, how many days in a week do/did you feel you a sudden, uncontrollable urge for a bowel movement? (select the option that most closely represents your own experience)

Q39:

Age Group

53

36

32

30

24

20

17

10

14

13

13

6

8

10

10

4

5

6

4

2

4

4

5

1

2

2

3

9

8

12

18

15

37

29

23

43

31

23

22

20

37

35

21

20

22

14

16

15

18

21

23

13

13

12

13

16

13

12

15

13

11

9

9

11

8

11

10

16

14

8

11

5

7

4

3

5

9

6

8

5

5

3

6

7

3

4

7

6

8

4

2

2

2

4

2

4

2

5

3

2

4

8

12

19

7

15

20

18

14

11

9

23

39

32

35

24

45

47

21

16

35

16

18

12

14

12

12

14

18

9

9

15

12

2

6

4

6

7

0

8

0

3

5

5

6

4

0

2

2

1

0

2

0

9

11

10

12

8

12

22



United we Stand


Overall

Resps

4608

Gender Resps

Male 1530

Female 3066

Not Stated 12

During your current or most recent period NOT experiencing a flare, how many runny stools or episodes of diarrhoea do/did you experience in the course of a typical day? (select the option that most closely represents your own experience)

EFCCA Overall

Q40:

38.5

29.0

16.8

9.9

1.9

1.2

2.7

0.0 20.0 40.0 60.0 80.0 100.0

% Did not experience

% 1-2 times a day

% 3-4 times a day

% 5-10 times a day

% 11-15 times a day

% More than 15 times a day

% NA/ don't know

38

25

29

29

25

17

17

33

11

9

8

2

2

0

1

1

0

3

3

8

39

29 17 10 2 1 338


day% NA/don't know


United we Stand


Resps

<18 yrs 160

19-34 1982

35-54 2001

55+ 460

Resps

Fully employed 2200



Student 665

Retired 256

Disabled 640



Other 458

N/ A 191

Resps






Other 18


Type of IBD

Q40:

Age Group

During your current or most recent period NOT experiencing a flare, how many runny stools or episodes of diarrhoea do/did you experience in the course of a typical day? (select the option that most closely represents your own experience)

45

34

28

33

29

29

26

7

14

19

22

6

7

12

16

1

2

2

2

1

1

1

2

6

2

3

2

47

28

26

53

24

23

24

24

39

41

31

31

25

25

29

22

30

31

29

28

15

20

23

12

24

16

22

17

16

7

14

16

5

14

18

19

18

9

9

1

3

4

1

4

5

5

2

1

1

1

2

3

0

3

3

3

0

1

1

2

3

3

4

4

4

2

2

4

4

42

21

33

42

33

54

50

26

31

28

17

22

22

12

19

13

28

17

8

11

8

17

6

6

1

2

3

0

0

6

1

1

1

0

0

0

3

2

6

6

8

0

48

10


day% NA/don't know


United we Stand


Overall

Resps

4609

Gender Resps

Male 1532

Female 3065

Not Stated 12

During your current or most recent period NOT experiencing a flare, do/did you find that you frequently have/had to abruptly stop or leave a conversation, meeting or activity to deal with symptoms of your bowel disease?

EFCCA Overall

Q41:

1.5

4.0

8.2

22.0

56.9

7.5

0.0 20.0 40.0 60.0 80.0 100.0







1

4

4

8

8

9

17

21

22

33

57

57

33

8

7

8

2

4 8 22 57 71



74%)% Sometimes (25-49%)




United we Stand


Resps

<18 yrs 160

19-34 1984

35-54 2000

55+ 460

Resps

Fully employed 2203



Student 667

Retired 255

Disabled 642



Other 456

N/ A 190

Resps






Other 18

Q41:

Age Group

During your current or most recent period NOT experiencing a flare, do/did you find that you frequently have/had to abruptly stop or leave a conversation, meeting or activity to deal with symptoms of your bowel disease?

Type of IBD


1

2

2

4

4

4

7

6

6

10

10

18

20

23

27

59

61

55

44

11

7

7

10

2

2

4

2

3

4

2

1

1

2

4

11

3

6

7

12

8

4

6

6

11

17

6

15

14

16

7

3

20

28

29

15

30

28

30

29

21

16

63

51

35

67

43

40

35

39

57

57

8

4

5

8

8

6

5

5

9

16

11

2

2

2

3

4

5

4

6

6

9

6

17

19

23

24

44

16

17

62

54

58

44

62

61

8

7

5

11

10

0

1

6



74%)% Sometimes (25-49%)




United we Stand


Overall

Resps

4607

Gender Resps

Male 1532

Female 3063

Not Stated 12

During your current or most recent period NOT experiencing a flare, how often do/did you worry about when the next flare will strike?

EFCCA Overall

Q42:

15.7

14.0

16.5

25.4

25.2

3.3

0.0 20.0 40.0 60.0 80.0 100.0







16

13

14

42

16

17

8

25

26

8

27

24

33

3

3

8

16

14 16 25 25 316



74%)% Sometimes (25-49%)




United we Stand


Resps

<18 yrs 160

19-34 1987

35-54 1997

55+ 458

Resps

Fully employed 2204



Student 668

Retired 253

Disabled 637



Other 455

N/ A 192

Resps






Other 18

Q42:

Age Group

During your current or most recent period NOT experiencing a flare, how often do/did you worry about when the next flare will strike?

Type of IBD


17

14

17

10

15

14

11

16

19

15

13

24

26

25

24

22

21

29

29

12

2

3

6

16

19

30

16

17

18

34

23

13

15

13

15

18

12

10

16

17

22

14

10

16

21

17

18

15

21

17

16

14

27

27

19

26

23

23

16

24

27

21

28

16

14

24

32

25

10

12

27

34

3

2

2

4

4

3

3

2

3

6

13

13

14

24

11

26

33

13

14

15

28

16

22

16

17

13

17

0

26

25

24

22

28

11

24

26

21

17

10

28

3

3

3

6

6

6

17

14



74%)% Sometimes (25-49%)




United we Stand


Section D : Overall Work IMPACT


United we Stand


Overall

% Yes Resps

60.5 4597

Gender % Yes Resps

Male 59.1 1524

Female 61.2 3061

Not Stated 41.7 12

Do you feel stressed or pressured about sick time from work due to IBD?

EFCCA Overall

Q43:

Scale : 3 = Yes, 2 = No, 1 = Not applicable/ don’t know

60.5

23.6

15.9

0.0 20.0 40.0 60.0 80.0 100.0

% Yes

% No

% Not applicable/don’t know

60 24 16

% Yes % No % Not applicable/don’t know

59

61

42

27

22

17

14

17

42


United we Stand


% Yes Resps

<18 yrs 49.7 159

19-34 66.9 1981

35-54 58.6 1996

55+ 44.5 456

% Yes Resps




Student 64.8 665

Retired 35.9 251

Disabled 59.8 646



Other 53.2 455

N/ A 34.4 189

% Yes Resps






Other 50.0 18

Type of IBD

Do you feel stressed or pressured about sick time from work due to IBD?


Age Group

Scale : 3 = Yes, 2 = No, 1 = Not applicable/ don’t know

Q43:

50

67

59

45

19

22

26

24

31

11

15

32

63

82

65

65

36

60

76

76

53

34

31

14

6

19

21

13

7

8

23

23

6

4

28

16

27

17

15

24

42

43

60

60

70

50

65

50

26

23

10

11

14

28

14

17

19

39

22

20

% Yes % No % Not applicable/don’t know


United we Stand


Overall

Resps

4417

Gender Resps

Male 1481

Female 2924

Not Stated 12

Please indicate any adjustments you have made to your working life, purely to avoid the need to take sick days as a result of your IBD:

EFCCA Overall

Q44:

10.8

15.5

15.8

58.0

0.0 20.0 40.0 60.0 80.0 100.0

% Working from home

% Working part-time

% Working flexible hours

% I have not made any such adjustments

10

17

10

19

8

18

15

8

61

56

67

11

16 16 5811

% Working from home % Working part-time % Working flexible hours % I have not made any such adjustments


United we Stand


Resps

<18 yrs 146

19-34 1932

35-54 1907

55+ 427

Resps

Fully employed 2192



Student 639

Retired 228

Disabled 574



Other 437

N/ A 177

Resps






Other 18

Type of IBD

Age Group


Please indicate any adjustments you have made to your working life, purely to avoid the need to take sick days as a result of your IBD:Q44:

9

12

13

7

15

17

13

8

17

16

13

77

59

55

61

8

13

24

10

12

13

13

21

15

12

5

56

22

11

8

21

21

39

23

13

18

15

10

17

19

16

13

14

11

69

16

44

62

68

47

49

28

49

63

7

12

11

13

14

11

12

17

20

24

10

11

16

15

17

24

17

61

57

50

53

57

61

11

18

% Working from home % Working part-time % Working flexible hours % I have not made any such adjustments


United we Stand


Overall

Resps

4426

Gender Resps

Male 1483

Female 2931

Not Stated 12

In the past year, how many days have you been absent from work for reasons related to your IBD?

EFCCA Overall

Q45:

26.2

3.0

4.5

3.5

2.7

5.9

11.3

7.3

4.7

4.5

26.4

0.0 20.0 40.0 60.0 80.0 100.0

% 0

% 1 day

% 2 days

% 3 days

% 4 days

% 5 days

% 6-10 days

% 11-15 days

% 16-20 days

% 20-25 days

% More than 25 days

26

33

3

3

8

5

4

0

4

3

8

3

3

0

6

6

8

12

11

8

7

8

17

5

5

0

6

4

8

25

27

8

26

3 4 4 3 6 11 7 5 4 2626

% 0 % 1 day % 2 days % 3 days % 4 days % 5 days % 6-10 days % 11-15 days % 16-20 days % 20-25 days % More than 25 days


United we Stand


Resps

<18 yrs 151

19-34 1933

35-54 1913

55+ 424

Resps

Fully employed 2196



Student 645

Retired 217

Disabled 576



Other 440

N/ A 177

Resps






Other 18


Type of IBD

Q45:

Age Group

In the past year, how many days have you been absent from work for reasons related to your IBD?

20

28

48

1

3

3

2

4

5

5

2

2

4

3

3

3

3

2

3

3

7

6

3

13

13

11

7

9

8

7

3

9

5

4

4

5

5

4

3

34

26

27

22

17

10

15

22

62

26

13

16

37

51

5

1

0

2

2

1

0

1

1

2

6

2

1

6

1

1

1

5

2

5

2

0

4

1

2

1

3

2

3

3

3

1

3

1

1

1

2

3

3

8

5

2

7

2

3

2

2

4

3

13

13

6

13

4

8

7

8

10

10

9

11

4

9

2

6

5

5

4

5

5

6

5

5

3

5

5

5

4

3

4

5

4

6

2

5

5

6

5

5

18

43

62

23

19

43

60

50

25

13

24

0

25

23

39

31

28

5

2

5

0

0

0

6

4

2

0

0

4

4

2

0

2

6

3

3

4

6

0

0

7

6

6

0

8

0

11

12

12

6

8

11

7

7

13

11

10

11

5

5

6

6

8

6

4

5

3

0

8

0

23

28

26

33

19

39

28

4

% 0 % 1 day % 2 days % 3 days % 4 days % 5 days % 6-10 days % 11-15 days % 16-20 days % 20-25 days % More than 25 days


United we Stand


Resps

714

866

611

Count

2150

k. Volume of blood in bleeding episode

l. I have never been absent from work due to IBD

m. Not applicable/Other

317

f. Fear of toilet frequency bringing attention to my condition from colleagues

Q46:

g. Fatigue, and/or not enough energy to get through the day

j. Rectal/anal pain or burning

a. Hospital/emergency department visit

b. Doctor appointment

c. Incontinence or fear of incontinence

d. Cramping or painful abdomen

i. Worry/fear of potential for embarrassment

h. Worry about gas pressure, discomfort

2396

906

2041

990

715

1214

If you have been absent from work due to your IBD, what was this primarily due to? (Tick all that apply)

2270

e. Fear of toilet frequency interfering with work activities

481

(4670)

43.7

48.6

21.2

46.0

26.0

15.3

51.3

19.4

15.3

18.5

13.1

6.8

10.3

0 20 40 60 80 100%


United we Stand


a. H

osp

ital

/em

erg

ency

dep

artm

ent

visi

t

b. D

oct

or

app

oin

tmen

t

c. In

con

tin

ence

or

fear

of

inco

nti

nen

ce

d. C

ram

pin

g o

r p

ain

ful a

bd

om

en

e. F

ear

of

toile

t fr

equ

ency

inte

rfer

ing

wit

h w

ork

ac

tivi

ties

f. F

ear

of

toile

t fr

equ

ency

bri

ng

ing

att

enti

on

to

m

y co

nd

itio

n f

rom

co

lleag

ues

g. F

atig

ue,

an

d/o

r n

ot

eno

ug

h e

ner

gy

to g

et

thro

ug

h t

he

day

h. W

orr

y ab

ou

t g

as p

ress

ure

, dis

com

fort

i. W

orr

y/fe

ar o

f p

ote

nti

al f

or

emb

arra

ssm

ent

j. R

ecta

l/an

al p

ain

or

bu

rnin

g

k. V

olu

me

of

blo

od

in b

leed

ing

ep

iso

de

l. I h

ave

nev

er b

een

ab

sen

t fr

om

wo

rk d

ue

to IB

D

m. N

ot

app

licab

le/O

ther

Res

ps

Male 45.1 50.2 21.6 43.4 24.6 14.9 48.3 19.0 15.4 20.3 14.2 6.8 8.4 1549

Female 43.3 48.2 21.1 47.6 26.9 15.6 53.1 19.7 15.4 17.8 12.6 6.8 11.3 3093

Not Stated 14.3 10.7 10.7 21.4 7.1 7.1 21.4 7.1 3.6 3.6 7.1 0.0 10.7 28

a. b. c. d. e. f. g. h. i. j. k. l. m. Resps

<18 yrs 59.5 62.6 11.7 50.9 18.4 11.7 50.3 13.5 14.1 14.7 10.4 2.5 12.9 163

19-34 49.4 55.2 22.4 51.5 29.9 18.1 55.0 19.8 16.7 19.2 14.7 6.0 6.9 2000

35-54 41.1 45.2 20.4 44.5 23.9 13.8 51.4 19.4 14.4 18.8 12.5 7.5 11.1 2020

55+ 26.8 31.9 23.1 29.1 22.1 11.6 36.8 20.1 14.3 16.5 9.9 9.2 20.8 467

Age Group

Q46: If you have been absent from work due to your IBD, what was this primarily due to? (Tick all that apply)

Gender


United we Stand


a. H

osp

ital

/em

erg

ency

dep

artm

ent

visi

t

b. D

oct

or

app

oin

tmen

t

c. In

con

tin

ence

or

fear

of

inco

nti

nen

ce

d. C

ram

pin

g o

r p

ain

ful a

bd

om

en

e. F

ear

of

toile

t fr

equ

ency

inte

rfer

ing

wit

h w

ork

ac

tivi

ties

f. F

ear

of

toile

t fr

equ

ency

bri

ng

ing

att

enti

on

to

m

y co

nd

itio

n f

rom

co

lleag

ues

g. F

atig

ue,

an

d/o

r n

ot

eno

ug

h e

ner

gy

to g

et

thro

ug

h t

he

day

h. W

orr

y ab

ou

t g

as p

ress

ure

, dis

com

fort

i. W

orr

y/fe

ar o

f p

ote

nti

al f

or

emb

arra

ssm

ent

j. R

ecta

l/an

al p

ain

or

bu

rnin

g

k. V

olu

me

of

blo

od

in b

leed

ing

ep

iso

de

l. I h

ave

nev

er b

een

ab

sen

t fr

om

wo

rk d

ue

to IB

D

m. N

ot

app

licab

le/O

ther

Res

ps

Fully employed 46.6 55.6 18.8 42.9 23.4 12.8 47.9 16.1 12.1 16.1 13.5 7.9 4.8 2223

Under-employed due to IBD 52.1 47.1 29.6 66.0 32.5 16.8 74.7 24.0 18.7 25.1 18.7 1.7 5.7 459

Un-employed due to IBD 49.6 46.3 35.1 62.5 43.4 30.0 67.2 33.3 30.7 33.1 18.6 1.0 11.9 387

Student 48.3 58.1 21.0 51.0 30.3 18.9 54.2 22.0 17.2 18.9 12.6 5.6 10.0 673

Retired 23.6 29.1 16.7 28.7 17.4 10.1 29.8 15.1 11.6 14.7 7.4 8.9 30.2 258

Disabled 46.4 48.4 29.0 50.4 28.6 18.9 55.5 23.7 17.5 24.0 11.8 2.9 17.7 651

Seeking disability 50.0 52.2 42.4 61.4 41.8 32.1 73.4 35.3 32.6 41.3 23.9 2.7 7.1 184

Unable to receive disability status 45.7 44.1 29.6 61.7 38.6 22.5 70.7 34.0 25.9 34.9 16.7 3.1 13.3 324

Other 38.8 43.0 18.2 42.7 24.7 13.4 49.9 15.6 14.8 16.5 11.3 10.6 15.4 461

N/ A 24.1 29.2 14.9 28.2 16.4 10.8 32.8 16.4 15.4 12.8 8.2 12.3 29.7 195

a. b. c. d. e. f. g. h. i. j. k. l. m. Resps

Ulcerative colitis 37.5 47.9 27.9 37.6 29.8 17.5 48.7 21.4 18.8 19.4 24.2 9.4 8.5 1535

Crohn’s Disease 47.4 49.5 17.2 50.4 23.6 13.8 53.1 18.0 13.0 17.9 7.0 5.4 11.4 2914

Indeterminate Colitis 43.5 50.0 33.3 49.1 32.4 22.2 49.1 25.0 22.2 26.9 25.0 6.5 4.6 108

Microscopic/ collagenous colitis 33.3 27.8 33.3 33.3 33.3 27.8 44.4 27.8 22.2 11.1 0.0 5.6 38.9 18

Not yet confirmed 35.3 39.2 25.5 51.0 35.3 15.7 47.1 23.5 25.5 19.6 13.7 9.8 13.7 51

Other 38.9 50.0 16.7 50.0 38.9 33.3 66.7 33.3 27.8 16.7 5.6 5.6 5.6 18

If you have been absent from work due to your IBD, what was this primarily due to? (Tick all that apply)

Type of IBD

Q46:



United we Stand


Overall

% No Resps

74.6 4338

Gender % No Resps

Male 74.0 -0.8 1451

Female 74.9 +0.4 2875

Not Stated 75.0 +0.5 12

% Diff v. Overall

Scale : 2 = Yes, 1 = No

Have you received or heard of complaints or unfair comments from your superiors and/or colleagues about your performance at work in relation to your illness?

% Diff v. Overall

EFCCA Overall

Q47:

25.4

74.6

0.0 20.0 40.0 60.0 80.0 100.0

% Yes

% No

25 75

% Yes % No

26

25

25

74

75

75


United we Stand


% No Resps

<18 yrs 77.6 +4.1 143

19-34 74.2 -0.6 1921

35-54 73.9 -1.0 1883

55+ 79.0 +5.9 386

% No Resps

Fully employed 80.7 +8.2 2177

Under-employed due to IBD 62.4 -16.3 439

Un-employed due to IBD 43.9 -41.2 335

Student 76.5 +2.6 635

Retired 73.4 -1.6 203

Disabled 60.0 -19.6 577

Seeking disability 53.8 -27.8 169

Unable to receive disability status 57.3 -23.1 293

Other 78.8 +5.7 425

N/ A 86.5 +15.9 155

% No Resps

Ulcerative colitis 78.3 +4.9 1437

Crohn’s Disease 72.8 -2.4 2703

Indeterminate Colitis 70.2 -5.9 104

Microscopic/ collagenous colitis 66.7 -10.6 15

Not yet confirmed 79.2 +6.1 48

Other 62.5 -16.2 16

Q47:

Age Group

% Diff v. Overall

% Diff v. Overall


Have you received or heard of complaints or unfair comments from your superiors and/or colleagues about your performance at work in relation to your illness?

Type of IBD % Diff v. Overall

22

26

26

21

78

74

74

79

19

38

56

23

27

40

46

43

21

14

81

62

44

77

73

60

54

57

79

86

22

27

30

33

21

38

78

73

70

67

79

63

% Yes % No


United we Stand


Overall

% No Resps

78.7 4301

Gender % No Resps

Male 78.0 -0.9 1443

Female 79.0 +0.5 2847

Not Stated 72.7 -7.5 11

% Diff v. Overall


Do you believe you have been discriminated in the workplace as a direct result of your IBD?

% Diff v. Overall

EFCCA Overall

Q48:

21.3

78.7

0.0 20.0 40.0 60.0 80.0 100.0

% Yes

% No

21 79

% Yes % No

22

21

27

78

79

73


United we Stand


% No Resps

<18 yrs 86.3 +9.8 139

19-34 79.2 +0.7 1909

35-54 76.7 -2.4 1866

55+ 82.7 +5.2 382

% No Resps

Fully employed 84.4 +7.4 2160



Student 82.5 +4.9 630

Retired 81.0 +3.0 200

Disabled 64.9 -17.5 570



Other 79.3 +0.8 420

N/ A 87.4 +11.1 151

% No Resps

Ulcerative colitis 83.1 +5.7 1422


Indeterminate Colitis 72.5 -7.8 102

Microscopic/ collagenous colitis 73.3 -6.8 15

Not yet confirmed 72.3 -8.0 47

Other 62.5 -20.5 16

Q48:

Age Group

% Diff v. Overall

% Diff v. Overall


Do you believe you have been discriminated in the workplace as a direct result of your IBD?



14

21

23

17

86

79

77

83

16

35

52

17

19

35

41

40

21

13

84

65

48

83

81

65

59

60

79

87

17

23

27

27

28

38

83

77

73

73

72

63

% Yes % No


United we Stand


Resps

Count

1023

f. My IBD does not affect my behaviour at work

Q49:

g. Not applicable/other

a. I am quiet or quieter during meetings

b. I cancel my attendance at meetings at the last minute

c. I do not participate in work social activities

d. I am irritable at work

955

1090

1159

1320

1356

How does IBD affect your behaviour at work? (Tick all that apply)

464

e. I am less motivated in my work

(4670)

23.3

9.9

24.8

21.9

29.0

28.3

20.4

0 20 40 60 80 100%


United we Stand


a. I

am q

uie

t o

r q

uie

ter

du

rin

g m

eeti

ng

s

b. I

can

cel m

y at

ten

dan

ce a

t m

eeti

ng

s at

th

e la

st

min

ute

c. I

do

no

t p

arti

cip

ate

in w

ork

so

cial

act

ivit

ies

d. I

am

irri

tab

le a

t w

ork

e. I

am le

ss m

oti

vate

d in

my

wo

rk

f. M

y IB

D d

oes

no

t af

fect

my

beh

avio

ur

at w

ork

g. N

ot

app

licab

le/o

ther

Res

ps

Male 25.6 10.9 26.5 24.5 31.6 28.5 16.8 1549

Female 22.4 9.5 24.1 20.8 27.9 28.3 22.3 3093

Not Stated 3.6 7.1 7.1 3.6 14.3 14.3 14.3 28


<18 yrs 22.1 8.0 19.0 12.9 22.1 16.0 37.4 163

19-34 25.3 9.8 24.0 22.4 33.8 30.9 15.8 2000

35-54 22.5 9.7 26.2 22.3 27.2 28.3 21.0 2020

55+ 19.9 12.8 25.1 22.3 20.1 21.8 32.5 467

Age Group

Q49: How does IBD affect your behaviour at work? (Tick all that apply)

Gender


United we Stand


a. I

am q

uie

t o

r q

uie

ter

du

rin

g m

eeti

ng

s

b. I

can

cel m

y at

ten

dan

ce a

t m

eeti

ng

s at

th

e la

st

min

ute

c. I

do

no

t p

arti

cip

ate

in w

ork

so

cial

act

ivit

ies

d. I

am

irri

tab

le a

t w

ork

e. I

am le

ss m

oti

vate

d in

my

wo

rk

f. M

y IB

D d

oes

no

t af

fect

my

beh

avio

ur

at w

ork

g. N

ot

app

licab

le/o

ther

Res

ps

Fully employed 24.1 8.1 23.0 25.2 30.9 38.1 10.5 2223

Under-employed due to IBD 33.1 17.4 41.8 28.3 41.4 16.1 14.6 459

Un-employed due to IBD 34.6 15.2 39.0 29.7 36.2 10.6 26.6 387

Student 24.8 10.1 22.6 17.1 30.3 27.5 22.7 673

Retired 15.1 9.7 17.4 15.1 16.7 15.1 45.7 258

Disabled 24.0 13.2 28.9 21.7 27.5 17.7 32.9 651

Seeking disability 27.7 21.2 42.4 32.6 43.5 9.2 20.7 184

Unable to receive disability status 32.1 17.6 39.5 26.5 40.1 9.6 25.6 324

Other 18.9 7.4 21.9 16.3 23.4 30.4 29.3 461

N/ A 12.3 7.7 11.3 10.8 15.4 26.2 39.5 195


Ulcerative colitis 24.2 11.0 28.0 24.2 32.2 28.8 16.8 1535

Crohn’s Disease 22.5 9.0 22.6 20.6 27.3 28.8 22.2 2914

Indeterminate Colitis 31.5 13.0 35.2 23.1 31.5 25.9 17.6 108

Microscopic/ collagenous colitis 22.2 16.7 33.3 16.7 22.2 11.1 33.3 18

Not yet confirmed 27.5 21.6 39.2 25.5 35.3 7.8 31.4 51

Other 27.8 22.2 27.8 27.8 33.3 22.2 22.2 18

How does IBD affect your behaviour at work? (Tick all that apply)

Type of IBD

Q49:



United we Stand


Overall


Mean Resps NA

3.64 4257 353


Male 3.60 -1.1 1413 117

Female 3.66 +0.5 2832 235

Not Stated 4.08 +12.3 12 1

EFCCA Overall

Q50:How much do you agree with the following statements? I believe that IBD has negatively affected my career path, opportunities for advancement, income and/or earning potential

% Diff v. Overall

Scale : 5 = Strongly agree, 4 = Agree, 3 = Neither agree nor disagree, 2 = Disagree, 1 = Strongly disagree

% Diff v. Overall

35.8

25.7

15.4

12.6

10.5

0.0 20.0 40.0 60.0 80.0 100.0

% Strongly agree

% Agree

% Neither agree nor disagree

% Disagree

% Strongly disagree

62 15 23

% Agree % Neither % Disagree

60

62

75

16

15

25

24

23

0


United we Stand


Mean Resps NA

<18 yrs 3.60 -1.1 102 51

19-34 3.59 -1.4 1899 93

35-54 3.67 +0.9 1873 134

55+ 3.72 +2.3 378 75

Mean Resps NA

Fully employed 3.15 -13.4 2112 110

Under-employed due to IBD 4.39 +20.7 454 4

Un-employed due to IBD 4.75 +30.6 370 8

Student 3.53 -2.8 582 85

Retired 4.07 +11.8 195 52

Disabled 4.33 +19.1 608 39

Seeking disability 4.39 +20.7 174 7

Unable to receive disability status 4.60 +26.4 313 10

Other 3.66 +0.7 421 35

N/ A 3.58 -1.4 130 52

Mean Resps NA


Crohn’s Disease 3.72 +2.3 2684 202

Indeterminate Colitis 3.78 +3.9 104 4


Not yet confirmed 3.85 +5.8 40 9

Other 3.69 +1.4 16 1



How much do you agree with the following statements? I believe that IBD has negatively affected my career path, opportunities for advancement, income and/or earning potential


% Diff v. Overall

Q50:

Age Group

60

60

62

65

25

16

15

11

15

24

22

24

46

88

96

58

76

82

84

92

61

62

20

7

2

19

8

10

9

6

19

15

34

5

1

23

9

7

2

20

23

16

56

64

63

69

63

69

17

14

18

15

18

0

26

22

18

15

31

20



United we Stand


Overall


Mean Resps NA

3.01 3223 1376


Male 2.94 -2.1 1068 459

Female 3.04 +1.0 2148 912

Not Stated 3.29 +9.3 7 5

EFCCA Overall

Q51: I have lost a job (or had to quit a job) because of my IBD

% Diff v. Overall


% Diff v. Overall

31.2

13.0

10.4

16.2

29.3

0.0 20.0 40.0 60.0 80.0 100.0

% Strongly agree

% Agree


% Disagree

% Strongly disagree

44 10 45


42

45

57

12

10

0

47

45

43


United we Stand


Mean Resps NA

<18 yrs 2.43 -19.0 53 99

19-34 2.92 -2.9 1403 588

35-54 3.07 +2.2 1473 528

55+ 3.20 +6.3 292 158

Mean Resps NA

Fully employed 2.23 -25.8 1524 689



Student 2.81 -6.5 389 278

Retired 3.72 +23.6 165 82

Disabled 4.14 +37.8 510 132



Other 3.11 +3.4 325 128

N/ A 2.87 -4.6 90 92

Mean Resps NA


Crohn’s Disease 3.18 +5.6 2033 848




Other 3.08 +2.4 13 4



I have lost a job (or had to quit a job) because of my IBD


% Diff v. Overall

Q51:

Age Group

23

42

46

49

23

12

9

10

55

47

45

41

22

65

93

39

64

78

69

80

47

37

11

11

4

13

7

6

12

8

13

19

67

24

3

48

16

19

12

40

44

30

34

49

52

56

33

54

12

10

10

0

11

0

54

41

38

44

46

56



United we Stand


Section E : Overall Life IMPACT


United we Stand


Overall


Mean Resps NA

2.85 4086 552


Male 2.79 -2.2 1344 194

Female 2.88 +1.1 2730 358

Not Stated 2.92 +2.3 12 0

EFCCA Overall

Q52: My IBD has prevented me from pursuing intimate relationship(s)

% Diff v. Overall


% Diff v. Overall

14.8

24.8

15.7

20.4

24.4

0.0 20.0 40.0 60.0 80.0 100.0

% Strongly agree

% Agree


% Disagree

% Strongly disagree

40 16 45


38

40

42

15

16

25

47

44

33


United we Stand


Mean Resps NA

<18 yrs 2.87 +0.6 77 78

19-34 2.84 -0.5 1826 170

35-54 2.85 +0.0 1795 222

55+ 2.92 +2.5 384 82

Mean Resps NA

Fully employed 2.67 -6.5 2009 211



Student 2.87 +0.5 570 99

Retired 2.90 +1.7 212 46

Disabled 3.30 +15.6 573 77



Other 2.85 0.0 391 68

N/ A 2.54 -10.9 144 46

Mean Resps NA


Crohn’s Disease 2.87 +0.5 2557 345




Other 2.63 -8.0 16 2



My IBD has prevented me from pursuing intimate relationship(s)


% Diff v. Overall

Q52:

Age Group

36

39

40

42

27

16

15

16

36

45

46

42

35

51

58

40

40

53

53

52

39

31

14

13

19

17

17

17

17

15

18

15

51

36

24

43

30

30

33

43

54

43

37

40

45

64

50

44

16

15

18

21

19

13

46

45

37

14

44

31



United we Stand


Overall


Mean Resps NA

2.25 3591 1020


Male 2.24 -0.7 1208 321

Female 2.26 +0.2 2376 694

Not Stated 3.43 +52.3 7 5

EFCCA Overall

Q53: My IBD has caused an intimate relationship to end

% Diff v. Overall


% Diff v. Overall

9.6

12.6

12.1

24.6

41.0

0.0 20.0 40.0 60.0 80.0 100.0

% Strongly agree

% Agree


% Disagree

% Strongly disagree

22 12 66


21

23

57

14

11

14

65

66

29


United we Stand


Mean Resps NA

<18 yrs 2.21 -2.0 63 93

19-34 2.23 -0.9 1612 384

35-54 2.28 +1.1 1583 413

55+ 2.24 -0.5 332 127

Mean Resps NA

Fully employed 2.09 -7.4 1788 424



Student 2.12 -5.6 497 172

Retired 2.38 +5.5 192 63

Disabled 2.79 +24.0 503 144



Other 2.17 -3.7 334 120

N/ A 2.04 -9.5 131 59

Mean Resps NA


Crohn’s Disease 2.34 +3.8 2244 646




Other 2.13 -5.2 15 3



My IBD has caused an intimate relationship to end


% Diff v. Overall

Q53:

Age Group

17

22

22

23

19

13

12

10

63

65

66

67

18

30

41

18

25

37

37

37

21

18

11

16

16

14

11

14

17

13

11

11

71

55

43

68

50

46

50

68

72

64

17

25

23

45

19

27

13

12

13

0

19

0

71

63

64

55

73

61



United we Stand


Overall


Mean Resps NA

2.48 4269 352


Male 2.46 -1.0 1419 118

Female 2.49 +0.5 2840 232

Not Stated 2.50 +0.8 10 2

EFCCA Overall

Q54: My IBD has prevented me from making new and/or keeping friends.

% Diff v. Overall


% Diff v. Overall

9.9

18.6

14.2

24.3

33.0

0.0 20.0 40.0 60.0 80.0 100.0

% Strongly agree

% Agree


% Disagree

% Strongly disagree

29 14 57


28

29

40

13

15

0

59

57

60


United we Stand


Mean Resps NA

<18 yrs 2.38 -4.0 139 19

19-34 2.52 +1.5 1887 104

35-54 2.48 -0.2 1839 168

55+ 2.37 -4.6 402 59

Mean Resps NA

Fully employed 2.24 -9.8 2050 165



Student 2.48 +0.0 631 39

Retired 2.48 -0.2 220 34

Disabled 2.98 +20.3 597 49



Other 2.37 -4.5 413 43

N/ A 2.20 -11.3 164 25

Mean Resps NA


Crohn’s Disease 2.51 +1.1 2669 221




Other 2.71 +9.0 17 1



My IBD has prevented me from making new and/or keeping friends.


% Diff v. Overall

Q54:

Age Group

27

31

27

24

10

14

15

14

63

56

58

62

22

41

50

29

28

44

45

41

24

22

13

17

14

15

12

14

15

19

16

10

65

42

36

56

43

40

40

60

68

60

25

29

34

31

50

41

14

14

19

31

9

6

61

56

47

38

53

41



United we Stand


Overall


Mean Resps NA

3.23 3986 639


Male 3.23 +0.0 1357 182

Female 3.23 +0.0 2621 454

Not Stated 3.00 -7.2 8 3

EFCCA Overall

Q55: My IBD has negatively affected my ability to perform to my full potential in an educational setting.

% Diff v. Overall


% Diff v. Overall

24.0

27.5

14.4

16.0

18.1

0.0 20.0 40.0 60.0 80.0 100.0

% Strongly agree

% Agree


% Disagree

% Strongly disagree

52 14 34


51

52

50

16

14

0

34

34

50


United we Stand


Mean Resps NA

<18 yrs 3.52 +8.8 145 14

19-34 3.36 +3.8 1805 191

35-54 3.13 -3.2 1705 303

55+ 2.98 -8.0 328 130

Mean Resps NA

Fully employed 2.87 -11.4 1932 285



Student 3.54 +9.3 633 40

Retired 3.21 -0.8 182 71

Disabled 3.77 +16.6 567 80



Other 3.12 -3.6 382 75

N/ A 2.97 -8.3 147 44

Mean Resps NA


Crohn’s Disease 3.28 +1.3 2526 368




Other 3.53 +9.1 17 1



My IBD has negatively affected my ability to perform to my full potential in an educational setting.


% Diff v. Overall

Q55:

Age Group

61

57

47

44

14

13

16

15

25

31

37

41

40

69

80

62

52

68

71

76

47

44

15

14

11

13

13

13

14

12

16

16

44

17

9

25

19

14

12

36

40

36

49

53

53

73

57

59

15

14

14

27

14

18

36

33

33

0

24

29



United we Stand


Resps

Count

927

f. I frequently wake from sleeping as a result of pain from my IBD

Q56:

a. I frequently consider the availability of toilets whenever I plan to attend an event, meeting, etc.

b. I worry about the ready availability of a toilet whenever I go somewhere new

c. I keep a list (from memory or written) of clean, accessible toilets and consider this when I leave home

d. I have had to be rude to people at times in order gain access to a toilet in order to prevent an accident

3116

1361

1855

1244

Please tick any of the following that apply to you:

3081

e. Other people have sometimes joked about me urgently needing a toilet

(4670)

66.7

66.0

29.1

19.9

26.6

39.7

0 20 40 60 80 100%


United we Stand


a. I

freq

uen

tly

con

sid

er t

he

avai

lab

ility

of

toile

ts

wh

enev

er I

pla

n t

o a

tten

d a

n e

ven

t, m

eeti

ng

, etc

.

b. I

wo

rry

abo

ut

the

read

y av

aila

bili

ty o

f a

toile

t w

hen

ever

I g

o s

om

ewh

ere

new

c. I

keep

a li

st (

fro

m m

emo

ry o

r w

ritt

en)

of

clea

n,

acce

ssib

le t

oile

ts a

nd

co

nsi

der

th

is w

hen

I le

ave

ho

me

d. I

hav

e h

ad t

o b

e ru

de

to p

eop

le a

t ti

mes

in

ord

er g

ain

acc

ess

to a

to

ilet

in o

rder

to

pre

ven

t an

acc

iden

t

e. O

ther

peo

ple

hav

e so

met

imes

joke

d a

bo

ut

me

urg

entl

y n

eed

ing

a t

oile

t

f. I

freq

uen

tly

wak

e fr

om

sle

epin

g a

s a

resu

lt o

f p

ain

fro

m m

y IB

D

Res

ps

Male 64.7 63.8 27.0 17.7 27.0 33.2 1549

Female 68.1 67.4 30.4 21.1 26.6 43.1 3093

Not Stated 28.6 32.1 10.7 3.6 10.7 25.0 28


<18 yrs 42.3 45.4 15.3 9.2 22.1 34.4 163

19-34 62.8 64.6 25.9 21.2 30.0 42.0 2000

35-54 71.2 68.1 31.9 19.8 25.5 39.7 2020

55+ 74.9 72.2 37.0 19.3 19.7 33.2 467

Age Group

Q56: Please tick any of the following that apply to you:

Gender


United we Stand


a. I

freq

uen

tly

con

sid

er t

he

avai

lab

ility

of

toile

ts

wh

enev

er I

pla

n t

o a

tten

d a

n e

ven

t, m

eeti

ng

, etc

.

b. I

wo

rry

abo

ut

the

read

y av

aila

bili

ty o

f a

toile

t w

hen

ever

I g

o s

om

ewh

ere

new

c. I

keep

a li

st (

fro

m m

emo

ry o

r w

ritt

en)

of

clea

n,

acce

ssib

le t

oile

ts a

nd

co

nsi

der

th

is w

he

n I

leav

e h

om

e

d. I

hav

e h

ad t

o b

e ru

de

to p

eop

le a

t ti

mes

in

ord

er g

ain

acc

ess

to a

to

ilet

in o

rder

to

pre

ven

t an

acc

iden

t

e. O

ther

peo

ple

hav

e so

met

imes

joke

d a

bo

ut

me

urg

entl

y n

eed

ing

a t

oile

t

f. I

freq

uen

tly

wak

e fr

om

sle

epin

g a

s a

resu

lt o

f p

ain

fro

m m

y IB

D

Res

ps

Fully employed 64.1 62.8 25.8 15.6 23.8 32.7 2223



Student 57.2 59.4 25.7 18.6 26.9 39.4 673

Retired 72.5 69.4 34.5 22.1 18.2 35.7 258

Disabled 81.1 76.2 41.8 28.7 32.6 55.8 651



Other 65.3 66.4 26.2 15.8 24.5 34.5 461

N/ A 56.9 57.4 20.5 14.9 23.1 29.2 195



Crohn’s Disease 65.2 64.1 28.7 19.7 28.0 41.9 2914




Other 72.2 72.2 38.9 27.8 33.3 55.6 18

Please tick any of the following that apply to you:

Type of IBD

Q56:



United we Stand


Overall

% Optimistic

Resps

38.8 4425

Gender%

OptimisticResps

Male 37.6 1483

Female 39.2 2930

Not Stated 58.3 12

Scale : 3 = More optimistic, 2 = More pessimistic, 1 = Neither more optimistic nor more pessimistic

The first time in your life when you met another person with IBD, did you find that this meeting made you feel:

EFCCA Overall

Q57:

38.8

7.5

53.8

0.0 20.0 40.0 60.0 80.0 100.0

% More optimistic

% More pessimistic

% Neither more optimistic nor more pessimistic

39 7 54

% More optimistic % More pessimistic % Neither more optimistic nor more pessimistic

38

39

58

7

7

33

55

53

8


United we Stand


% Optimistic

Resps

<18 yrs 42.8 145

19-34 42.9 1926

35-54 36.1 1917

55+ 30.3 433

% Optimistic

Resps




Student 45.9 638

Retired 33.6 235

Disabled 35.1 624



Other 34.8 437

N/ A 38.2 178

% Optimistic

Resps






Other 47.1 17

Age Group

Scale : 3 = More optimistic, 2 = More pessimistic, 1 = Neither more optimistic nor more pessimistic

Q57: The first time in your life when you met another person with IBD, did you find that this meeting made you feel:


Type of IBD

43

43

36

30

6

8

8

6

52

49

56

64

39

40

38

46

34

35

39

33

35

38

7

9

10

7

6

9

10

10

7

7

54

51

52

47

56

51

57

59

55

60

41

37

37

33

38

47

6

8

13

0

0

6

52

54

50

67

47

63

% More optimistic % More pessimistic % Neither more optimistic nor more pessimistic


United we Stand


Overall

% Yes Resps

55.7 4521

Gender % Yes Resps

Male 56.6 +1.8 1504

Female 55.2 -0.9 3006

Not Stated 54.5 -2.0 11

EFCCA Overall

Q58: Have you engaged in any way with one of our EFCCA member associations?

% Diff v. Overall

% Diff v. Overall


44.3

55.7

0.0 20.0 40.0 60.0 80.0 100.0

% Yes

% No

44 56

% Yes % No

43

45

45

57

55

55


United we Stand


% Yes Resps

<18 yrs 56.2 +1.0 153

19-34 60.8 +9.1 1965

35-54 52.2 -6.2 1958

55+ 48.2 -13.4 442

% Yes Resps

Fully employed 55.6 -0.1 2180



Student 57.6 +3.5 658

Retired 43.1 -22.6 246

Disabled 47.7 -14.3 631



Other 59.9 +7.6 449

N/ A 61.3 +10.1 186

% Yes Resps

Ulcerative colitis 55.0 -1.2 1487


Indeterminate Colitis 58.3 +4.8 108

Microscopic/ collagenous colitis 72.2 +29.7 18

Not yet confirmed 72.9 +31.0 48

Other 72.2 +29.7 18



Have you engaged in any way with one of our EFCCA member associations?

Employment and Disability Status % Diff v. Overall

% Diff v. Overall

Q58:

Age Group

44

39

48

52

56

61

52

48

44

48

45

42

57

52

48

49

40

39

56

52

55

58

43

48

52

51

60

61

45

45

42

28

27

28

55

55

58

72

73

72

% Yes % No


United we Stand


Resps

45

Count

400

f. Volunteering to help your national IBD association

Q59:

g. Helping your national IBD association in fundraising

a. Attending local or national patient meetings

b. Signing-up to be a member of your national IBD association

c. Receiving patient information leaflets from your national IBD association

d. Calling a helpline, or <emailing your national IBD association

i. Becoming an EFCCA delegate, or working within an EFCCA project team

h. Becoming a leader, or joining a committee within your national IBD association

186

142

947

1598

275

1259

Have you engaged in any way with one of our member associations? If so, what level of involvement do you have? (Tick all that apply)

1708

e. Subscribing to newsletters or magazines from your national IBD association

(4670)

20.3

36.6

34.2

8.6

27.0

5.9

4.0

3.0

1.0

0 20 40 60 80 100%


United we Stand


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ass

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ject

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Res

ps

Male 21.0 35.6 34.0 8.4 26.4 5.5 4.2 3.0 1.0 1549

Female 20.0 37.2 34.5 8.7 27.4 6.1 3.8 3.0 0.9 3093

Not Stated 10.7 17.9 17.9 7.1 10.7 7.1 7.1 7.1 0.0 28


<18 yrs 18.4 31.9 31.9 8.6 25.2 3.7 1.8 1.2 0.0 163

19-34 17.5 31.8 29.5 7.8 23.9 5.8 3.6 2.8 1.0 2000

35-54 21.7 39.9 37.0 8.8 29.8 6.0 4.3 3.1 1.0 2020

55+ 27.2 45.8 44.5 11.1 29.6 7.1 5.6 4.7 1.1 467

Age Group

Q59: Have you engaged in any way with one of our member associations? If so, what level of involvement do you have? (Tick all that apply)

Gender


United we Stand


a. A

tten

din

g lo

cal o

r n

atio

nal

pat

ien

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s

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nat

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al

IBD

ass

oci

atio

n

c. R

ecei

vin

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atie

nt

info

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leaf

lets

fro

m

you

r n

atio

nal

IBD

ass

oci

atio

n

d. C

allin

g a

hel

plin

e, o

r <

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ling

yo

ur

nat

ion

al

IBD

ass

oci

atio

n

e. S

ub

scri

bin

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ette

rs o

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m

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atio

nal

IBD

ass

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f. V

olu

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ur

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CA

del

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ject

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m

Res

ps

Fully employed 19.9 37.1 34.5 7.8 27.2 6.1 4.6 3.3 1.2 2223

Under-employed due to IBD 23.1 41.0 36.2 12.0 32.0 8.1 4.6 3.9 1.1 459

Un-employed due to IBD 21.2 37.0 36.7 11.4 25.3 5.7 4.9 2.3 0.5 387

Student 18.9 31.8 33.1 8.8 26.0 6.1 3.9 2.7 1.3 673

Retired 30.6 46.1 45.0 9.7 30.6 7.0 4.3 3.9 0.4 258

Disabled 29.3 43.9 40.6 13.2 33.0 9.4 4.5 5.1 1.7 651

Seeking disability 21.7 41.8 40.8 13.6 27.7 8.7 6.0 3.8 1.1 184

Unable to receive disability status 23.8 41.0 39.8 10.2 30.9 5.6 3.7 2.2 0.6 324

Other 18.9 32.1 31.5 10.2 23.4 4.8 3.0 1.7 0.4 461

N/ A 16.9 32.3 28.2 3.6 26.2 1.5 0.5 0.5 0.0 195


Ulcerative colitis 20.1 37.4 35.5 7.2 27.0 5.1 3.9 2.5 0.8 1535

Crohn’s Disease 20.7 36.7 34.1 9.3 27.5 6.3 4.0 3.4 1.1 2914

Indeterminate Colitis 22.2 34.3 36.1 11.1 24.1 5.6 6.5 2.8 0.0 108

Microscopic/ collagenous colitis 0.0 27.8 16.7 16.7 11.1 0.0 0.0 0.0 0.0 18

Not yet confirmed 9.8 27.5 17.6 2.0 15.7 5.9 2.0 3.9 2.0 51

Other 22.2 27.8 22.2 11.1 16.7 16.7 5.6 0.0 0.0 18

Have you engaged in any way with one of our member associations? If so, what level of involvement do you have? (Tick all that apply)

Type of IBD

Q59:



United we Stand


Overall


Mean Resps NA

3.82 2176 1363


Male 3.81 -0.2 712 477

Female 3.82 +0.0 1458 883

Not Stated 4.67 +22.1 6 3

EFCCA Overall

Q60: If yes, to what degree has being part of a patient's association affected the impact on your life in general as someone with IBD?

% Diff v. Overall

Scale : 5 = Significant improvement, 4 = Slight improvement, 3 = No change, 2 = Slightly worse, 1 = Significantly worse

% Diff v. Overall

20.4

42.8

35.7

0.9

0.3

0.0 20.0 40.0 60.0 80.0 100.0

% Significant improvement

% Slight improvement

% No change

% Slightly worse

% Significantly worse

63 36 1

% Improvement % No change % Worse

63

63

100

36

36

0

1

1

0


United we Stand


Mean Resps NA

<18 yrs 3.80 -0.6 64 55

19-34 3.80 -0.4 826 658

35-54 3.84 +0.5 1032 529

55+ 3.79 -0.7 252 120

Mean Resps NA

Fully employed 3.82 +0.0 1030 678



Student 3.80 -0.6 289 211

Retired 3.92 +2.7 144 61

Disabled 3.85 +0.7 360 149



Other 3.75 -1.9 186 147

N/ A 3.82 +0.1 74 60

Mean Resps NA

Ulcerative colitis 3.85 +0.8 714 466

Crohn’s Disease 3.80 -0.4 1378 822




Other 3.83 +0.3 6 7

Scale : 5 = Significant improvement, 4 = Slight improvement, 3 = No change, 2 = Slightly worse, 1 = Significantly worse


If yes, to what degree has being part of a patient's association affected the impact on your life in general as someone with IBD?


% Diff v. Overall

Q60:

Age Group

59

63

64

59

41

36

35

40

0

1

1

1

64

64

59

63

67

63

60

64

60

61

35

36

39

35

33

35

40

35

39

38

1

1

2

2

1

0

1

1

1

1

66

61

63

75

71

67

33

37

31

25

24

33

1

1

6

0

0

6

% Improvement % No change % Worse

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