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Table 7 UCPPS symptom variability focus group discussion outline, MAPP Research Network

From: Urological chronic pelvic pain syndrome flares and their impact: qualitative analysis in the MAPP network

Introductions Let’s go around the room and tell us your first name and how long you’ve been living with chronic pelvic pain?
Typical symptoms Can you tell me what your symptoms are like on a typical day for you?a
Probe: If no typical day: can you tell me what your symptoms were like yesterday or on a good day?
Variation in symptoms Are most days the same or are there times when your symptoms are much worse than usual? What do you call it when this happens? Do you ever think of it as a “flare”?
Probe: If no: how would you define a flare?
Probe: Do you have any other names for flares?
Description of variation Can you tell me what it’s like to have a flare/(or whatever they call it)?
Probe: Can you tell me what your symptoms are like when you have a flare? For instance, what your pain or urinary habits are like when you have a flare.
Probe: How big of a change is that from your usual symptoms?
Probe: What changes, if any, do you see in bowel habits, mood, or other symptoms?
Probe: Do your symptoms change quickly or is it a gradual change?
Probe: How long does it usually take for a change from usual symptoms to what you call a “flare”?
Probe: Do your symptoms go away quickly or slowly? How long does that take?
Probe: How often do you have flares?
Probe: Would you say every day, every week, every month, or less frequently?
Probe: How long do they usually last—hours, days, weeks, or what?
Probe: If no one mentions flares that last only minutes or hours: have you ever had flares that last only minutes or hours?
Probe: What are your symptoms like during flares that last for minutes or hours?
Probe: Do these shorter flares bother you? How do they bother you? Do they cause you to stop what you are doing at the time?
Predictable How predictable are flares? Are there certain things that you think cause them or are related to them? What are things that trigger them or predict that they will happen?
Probe: Do you think that it’s your fault when you have a flare—that you could have prevented it—or do you think they just happen for no reason?
Relief What helps relieve your symptoms during flares?
Best and worst flare Think about the worst flare you’ve ever had and the least bothersome flare you’ve ever had.
What made the worst flare so bad?
What made the least bothersome flare not so bad?
Effects on life When you’re having a flare, how does this affect your life?
Probes: For example, how does it affect your work, your family, your social activities, your relationships, your sex life, or any other aspects of your life that you’d like to tell me about?
Probe: Do you have to stay at home, stay in bed, be near a bathroom, or any other special things when you are having a flare?
Probe: Do you take medications for it—either different ones or more than usual?
Probe: How does that affect your activities when you are having a flare? What about very short flares?
Effects of fluctuation How does the fact that your symptoms fluctuate over time or that you have flares affect your life?
Probe: Are there things that you avoid doing or committing to because your symptoms might be worse at times?
Probe: Does having flares affect your schooling, work or family life or did it in the past?
Other aspects of flares Is there anything else that you’d like to tell me about flares—anything I haven’t asked about?
Most bothersome feature of chronic pelvic pain This discussion has focused mainly on flares, but now let’s talk more broadly about chronic pelvic pain. If you could tell someone without chronic pelvic pain about the one most bothersome aspect of your condition, what would it be, or if doctors and researchers could work on only one aspect of chronic pelvic pain, what would you like it to be? Why is that the most important one for you?
  1. aOur procedure was to first ask the question and encourage general discussion, and then to follow up with specific probes, as needed, to address additional aspects of the topic