IC/BPS Symptom Burden - Interstitial Cystitis Association · 54.2 [VALUE].0 80.4 80.9 81.4 87.6 0...

IC/BPS Symptom BurdenResults from an Interstitial Cystitis Association (ICA) Survey

Supported by an unrestricted grant from Aquinox Pharmaceuticals, Inc.

Copyright 2017: Interstitial Cystitis Association

• Interstitial Cystitis Association (ICA) constituents were asked to share their experiences of living with IC/BPS with the ICA to bring the patients voice to the FDA

• Response rate: 2.5% (1133/45,000)

• Survey open for comment for 7 days

– 130 responses in 30 minutes

– 230 responses in 1 hour

– 892 responses in 24 hours

Survey Response


Survey Demographics

Parameter

Time since onset of symptoms, years 17 years

Time since diagnosis, years 12 years

Sex, % (n)Female 93% (1038)

Male 7% (79)

Race, % (n)

White 93% (1049)

Black 1.7% (19)

Asian <1% (7)

Other 2.6% (29)

5 year

difference


Bladder Pain is the

Most Bothersome Symptom43.4

13.011.8

16.615.3

0

5

10

15

20

25

30

35

40

45

50

Pe

rce

nta

ge

of

pa

rtic

ipa

nts

se

lect

ing

sym

pto

m a

s m

ost

bo

the

rso

me

(%

)

IC/BPS Symptom

Bladder Pain Urinary Frequency Urinary Urgency Nocturia Other

33% of participants who selected

“other” listed pain (not specific

to bladder pain) as most

bothersome

N=602 selected one symptom as being the most bothersome; Participants were asked to “rank the following you may experience with

your IC/BPS based on how bothersome they are to you.” If the participant selected other, they were asked to specify the symptom.


IC/BPS Symptoms are Terribly

Bothersome: Bladder Pain

39 42

6072 70

125

105

148155

93

215

0

50

100

150

200

250

0 1 2 3 4 5 6 7 8 9 10

Nu

mb

er

of

Pa

rtic

ipa

nts

(n

)

Bother Score

Bladder Pain

Not Bothersome Terribly Bothersome

N=1124; Participants were asked to “select the one number that best represents how much that symptom bothers you on average each

day over the last week. Choosing the number 0 represents that symptom doesn’t bother you at all and 10 being it is terribly

bothersome to you and interferes with your daily life, activities and relationships.”


IC/BPS Symptoms are Terribly Bothersome:

Bladder Pain and Urinary Symptoms

0

50

100

150

200

250

0 1 2 3 4 5 6 7 8 9 10

Nu

mb

er

of

Pa

rtic

ipa

nts

(n

)

Bother Score

Bladder Pain Urinary Frequency UrgencyNot Bothersome Terribly Bothersome

N=1124; Participants were asked to “select the one number that best represents how much that symptom bothers you on average

each day over the last week. Choosing the number 0 represents that symptom doesn’t bother you at all and 10 being it is terribly

bothersome to you and interferes with your daily life, activities and relationships.”


Patients with IC/BPS Describe Their

Bladder Pain as Horrible

N=1114; Participants were asked to use one word to describe their bladder pain.


Patients with IC/BPS Qualify Their

Bladder Pain as a Burning Sensation



Patients with IC/BPS Identify Their

Bladder Pain as Debilitating



IC/BPS Negatively Impacts

Quality of Life

54.2

[VALUE].0

80.4

80.9

81.4

87.6

0 10 20 30 40 50 60 70 80 90 100

Social life

Career

Travel

Physical activity

Personal relationships

Sexual intimacy

Percentage of participants selecting true (%)

IC/BPS negatively

impacts:

N=1127; Participants were asked to select true or false to statements about the effect IC/BPS has physical activity, social life, travel,

career, sexual intimacy, and personal relationships.


IC/BPS Negatively Impacts

Quality of Life

24.6

65.6

70.6

81.8

0 10 20 30 40 50 60 70 80 90 100

Consideration of suicide

Feelings of isolation

Feelings of depression

Feelings of anxiety

Percentage of participants selecting true (%)

IC/BPS has

caused:

N=1127; Participants were asked to select true or false to statements about the effect IC/BPS has on feelings of anxiety, depression, and

isolation, and whether they have considered suicide.


Patients with IC/BPS Want

Medications to Treat Bladder Pain

53

48

33

28

11

14

3

7

1

3

0% 20% 40% 60% 80% 100%

If a medication were available that treats some of

my symptoms but not all of them, I would want to

try it

If a medication treated my bladder pain but not

my urinary symptoms, I would want to try it

Percentage of Participants (%)

Strongly agree Agree Neither agree nor disagree Disagree Strongly Disagree

N=1127; Participants were asked to which extent they agree or disagree with the above statements.


Patients with IC/BPS Want a Medication

That Addresses Bladder Pain

N=1117; Participants were asked “If you could change one thing about your condition with a medication, what would it be?”


IC/BPS Symptom Burden - Interstitial Cystitis Association · 54.2 [VALUE].0 80.4 80.9 81.4 87.6 0...

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