IC/BPS Symptom Burden
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- Oliver Lamb
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1 IC/BPS Symptom Burden Results from an Interstitial Cystitis Association (ICA) Survey Supported by an unrestricted grant from Aquinox Pharmaceuticals, Inc.
2 Survey Response 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
3 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) White 93% (1049) Race, % (n) Black 1.7% (19) Asian <1% (7) Other 2.6% (29) 5 year difference
4 Bladder Pain is the Most Bothersome Symptom Percentage of participants selecting symptom as most bothersome (%) % of participants who selected other listed pain (not specific to bladder pain) as most bothersome IC/BPS Symptom Bladder Pain Urinary Frequency Urinary Urgency Nocturia Other 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.
5 IC/BPS Symptoms are Terribly Bothersome: Bladder Pain 250 Bladder Pain 215 Number of Participants (n) Not Bothersome Bother Score 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.
6 IC/BPS Symptoms are Terribly Bothersome: 250 Bladder Pain and Urinary Symptoms Number of Participants (n) Bother Score Not Bothersome Bladder Pain Urinary Frequency Urgency 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.
7 Patients with IC/BPS Describe Their Bladder Pain as Horrible N=1114; Participants were asked to use one word to describe their bladder pain.
8 Patients with IC/BPS Qualify Their Bladder Pain as a Burning Sensation N=1114; Participants were asked to use one word to describe their bladder pain.
9 Patients with IC/BPS Identify Their Bladder Pain as Debilitating N=1114; Participants were asked to use one word to describe their bladder pain.
10 IC/BPS Negatively Impacts IC/BPS negatively impacts: Sexual intimacy Quality of Life 87.6 Personal relationships Physical activity Travel Career [VALUE].0 Social life Percentage of participants selecting true (%) 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.
11 IC/BPS Negatively Impacts IC/BPS has caused: Feelings of anxiety Quality of Life 81.8 Feelings of depression 70.6 Feelings of isolation 65.6 Consideration of suicide Percentage of participants selecting true (%) 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.
12 Patients with IC/BPS Want Medications to Treat Bladder Pain If a medication treated my bladder pain but not my urinary symptoms, I would want to try it If a medication were available that treats some of my symptoms but not all of them, I would want to try it % 20% 40% 60% 80% 100% 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.
13 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?
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