I was reading up on Lialda since I hadn't heard of it before recently, and I came across this survey they did. I just thought I would share this, I thought it was very interesting!
1. about how many flare-ups have you experienced over the past 12 months?
UC patients reported an average of 8 flare-ups per year that result in missed days of work and disruption to life activities. Patients with mild UC reported 5 flares; patients with moderate UC reported 8 flares; patients with severe UC reported 11 flares. These patients self-reported their level of severity.
Interestingly, gastroenterologists who participated in the survey thought 3 flare-ups per year was typical among UC patients.
The next question may shed some light on why doctors gave a lower number than the UC patients surveyed.
2. How many of these flare-ups did you discuss with your doctor?
Many UC patients reported that they do not discuss symptoms with their doctors.
* 34% of patients reported that they are sometimes "reluctant" to tell their doctor about flare-ups, including 8% who said they were always "reluctant"
* 27% reported that they discussed fewer than half of their flare-ups with their physician
3. Which statement BEST describes how effectively your disease has been controlled over the past 12 months?
My symptoms were completely or mostly under control
My symptoms were present but did not interfere with my life
My symptoms caused some disruption to my activities, but my quality of life was okay
My symptoms negatively affected my life on a regular basis
Only 21% of UC patients reported that their UC was "completely or mostly under control."
In contrast, gastroenterologists reported that they think 48% of their patients' UC symptoms are "completely or mostly under control."
4. How much do you agree or disagree with the following statement? Living with UC is a daily struggle.
61% of UC patients reported that they "somewhat agreed" or "strongly agreed" that living with UC is a daily struggle.
Gastroenterologists, on the other hand, reported that they think living with UC is a daily struggle for only 28% of their patients.
5. How much do you agree or disagree with the following statement? Not feeling well from UC has become a normal part of my life.
73% of UC patients reported that "not feeling well from UC has become a normal part of my life."
Gastroenterologists reported that they thought only 37% of their patients feel this way.
Wow. It's amazing how little even our own doctors really understand us.
Here are more interesting findings:
56% said UC is "somewhat" disruptive to their lives, while 21% said UC is "very" disruptive.
* 82% said UC was disruptive to their emotional state
* 75% said UC was disruptive to sexual relations
* 64% said UC was disruptive to their relationship with a spouse
* 59% said UC was disruptive to their relationship with other family members and friends
93% said UC is "disruptive" during a flare-up; 53% said it is "very disruptive"
62% said UC makes it "difficult to lead a normal life"
61% said living with UC is a "daily struggle"
60% said UC has "wrecked important moments" in their lives
53% said UC "controls" them, rather than they control their UC
Most UC patients surveyed have accepted flare-ups as "normal" and don't expect much from remission. Clinically, remission means being without symptoms for a period of time—remission can span months or even years; however, symptoms can eventually return.
74% believe it is "normal" to have flare-ups
58% believe remission means living with UC symptoms
UC patients' reluctance to discuss their condition could contribute to the low awareness of UC among the general public.
74% of the public say they have either never heard of UC or have heard of it but know little about it
34% of the public say that UC is "very disruptive" (compared to 55% of UC patients)
In contrast, the general public overestimates the level of disruption caused by migraines, asthma and RA, which are more well-known diseases.
84% of UC patients said they worry about the long-term health effects of having UC, compared to 45% of migraine patients, 72% of RA patients and 58% of asthma patients
82% of UC patients said their condition made life more stressful, versus 75% of migraine patients, 69% of RA patients and 46% of asthma patients
62% of UC patients reported feeling "sometimes" or "always" depressed about having their condition, versus 49% of migraine patients, 52% of RA patients and 25% of asthma patients
Specific worries most commonly mentioned by UC patients were developing colon cancer, having their colon removed, requiring surgery and experiencing public fecal incontinence.
Feeling isolated is also a risk for people with UC.
70% said that their UC is embarrassing to them
66% said that they are reluctant to tell people about their condition