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Table 9 Items of the EPDD v1 and v2

From: Development and content validation of a patient-reported endometriosis pain daily diary

EPDDv1

EPDDv2

Pelvic pain (including dysmenorrhea & NMPP)

 During the past 24 h, did you have any vaginal bleeding or spotting?

During the past 24 h, did you have any vaginal bleeding or spotting?

 During the past 24 h, have you been menstruating (vaginal bleeding or spotting during your period)?

During the past 24 h, have you been menstruating (vaginal bleeding or spotting during your period)?

 During the past 24 h, at its worst, how severe was your endometriosis-related pain?

During the past 24 h, at its worst, how severe was your endometriosis-related pain?

Was the pain you experienced during the past 24 h:

1. Stable (constant pain that doesn’t change much, and never pain free).

2. Intermittent (I feel pain sometimes, but other times I’m pain-free)

3. Variable (“background” pain all the time, but sometimes pain is worse than at other times)

Dyspareunia and sexual activity

 During the past 24 h, did you have sexual intercourse or engage in any sexual activity that involved full vaginal penetration?

During the past 24 h, did you have sexual intercourse or engage in any other sexual activity that involved full vaginal penetration?

 During the past 24 h, at its worst, how would you rate your level (degree) of pain at the entrance of the vagina during or following vaginal penetration?

During the past 24 h, at its worst, how would you rate your level (degree) of pain at the entrance of the vagina during or following vaginal penetration?

 During the past 24 h, at its worst, how would you rate your level (degree) of pain felt DEEP in your vagina during or following DEEP vaginal penetration?

During the past 24 h, at its worst, how would you rate your level (degree) of pain felt DEEP in your body during or following DEEP vaginal penetration?

During the past 24 h, did you avoid sexual intercourse?

 During the past 24 h, did you avoid sexual intercourse because of your endometriosis?

You said you avoided sexual intercourse in the past 24 h. During the past 24 h, did you avoid sexual intercourse because of your endometriosis?

During the past 24 h, did you feel a decreased interest in sexual intimacy?

Pain during defecation

During the past 24 h, did you have one or more bowel movements?

During the past 24 h, at its worst, how severe was the pain when you had a bowel movement?

Bleeding

 You said you had been menstruating during the past 24 h. On average, how heavy was this bleeding or spotting compared to your usual menstruation?

You said you had been menstruating during the past 24 h. On average, how heavy was this bleeding or spotting compared to your usual menstruation?

 During the past 24 h, did you have any vaginal bleeding or spotting related to sexual activity that involved full vaginal penetration?

During the past 24 h, did you have any vaginal bleeding or spotting related to sexual activity that involved full vaginal penetration?

 You said you had vaginal bleeding or spotting related to sexual activity during the past 24 h. On average, how heavy was this bleeding or spotting compared to your usual menstruation?

You said you had vaginal bleeding or spotting related to sexual activity during the past 24 h. On average, how heavy was this bleeding or spotting compared to your usual menstruation?

During the past 24 h, did you have any vaginal bleeding or spotting related to one or more bowel movements?

You said you had vaginal bleeding or spotting related to one or more bowel movements during the past 24 h. On average, how heavy was this bleeding or spotting compared to your usual menstruation?

 During the past 24 h, did you have any vaginal bleeding or spotting, not related to menstruation? (Please do not include vaginal bleeding or spotting related to sexual activity that involved full vaginal penetration)

During the past 24 h, did you have any other vaginal bleeding or spotting, not related to menstruation? (Please do not include vaginal bleeding or spotting related to bowel movements or sexual activity that involved full vaginal penetration)

 You said you had other vaginal bleeding or spotting during the past 24 h that was not due to your period or sexual activity or bowel movements. On average, how heavy was this bleeding or spotting compared to your usual menstruation?

You said you had other vaginal bleeding or spotting during the past 24 h that was not due to your period or sexual activity or bowel movements. On average, how heavy was this bleeding or spotting compared to your usual menstruation?

Hot flashes

 During the past 24 h, did you have any hot flashes?

During the past 24 h, did you have any hot flashes?

 During the past 24 h, how many hot flashes did you have?

During the past 24 h, how many hot flashes did you have?

Daily activities

 During the past 24 h, how much did your endometriosis-related pain interfere with your daily activities?

During the past 24 h, how difficult has it been to do your daily activities?

During the past 24 h, have you walked?

During the past 24 h, how difficult has it been to walk?

During the past 24 h, have you exercised?

During the past 24 h, how difficult has it been to exercise?

During the past 24 h, have you done any social activities?

During the past 24 h, how difficult has it been to do social activities?

During the past 24 h, have you done any leisure activities?

During the past 24 h, how difficult has it been to do leisure activities?

During the past 24 h, have you done any household activities?

During the past 24 h, how difficult has it been to do household activities?

During the past 24 h, have you done any work or school activities?

During the past 24 h, how difficult has it been to do work or school activities?

Do you have a spouse/partner?

During the past 24 h, how difficult has your relationships been with your partner?

During the past 24 h, how difficult have your relationships been with other important people in your life, e.g., family, friends, people at work?

During the past 24 h, how difficult has it been to wash or dress yourself?

During the past 24 h, how difficult has it been to fall asleep?

During the past 24 h, how difficult has it been to stay asleep?

Rescue medication/protection

 During the past 24 h, how many sanitary products (panty liners, pads or tampons) did you use for any type of vaginal bleeding?

During the past 24 h, how many sanitary products (panty liners, pads or tampons) did you use for any type of vaginal bleeding?

 During the past 24 h, did you use your rescue medication for your endometriosis-related pain?

During the past 24 h, did you use your rescue medication for your endometriosis-related pain?

 During the past 24 h, how many tablets of your rescue medication did you use?

During the past 24 h, how many tablets of your rescue medication did you use?