Table 5 Comparison of four algorithms for aggregation of daily responses for ESD “worst pelvic pain” NRS

Score A: average of the worst 7 days

Patients, 36%/clinicians, 75%

Meaningful for patients with significant pain for one week of the month and lower pain for the remaining days

Meaningful for patients that would like treatment to address the “most severe” pain days

 “There is like just an always—I guess an always constant something [low level pain], but I can deal with that… So, I guess—I mean it doesn’t bother me. I would rather look at that target like week or ten days or something like that.” (US-12)

Patients, 44%/clinicians, 25%

Not meaningful for patients with significant pain lasting ≥ 7 days a month

Not meaningful for patients who consider pain of lesser severity to also be important

 “Just looking at the seven worst days … if someone has very bad pain for one and a half weeks in a row, then this calculation makes no sense at all” (DE-04)

Score B: average of all the days

Patients, 40%/Clinicians, 25%

Meaningful for patients with pain every day of the month

Meaningful for patients who consider pain of any severity to be important

 “I mean, you know, yes, those seven [worst] days, that sucks when you are hurting that bad.[…] But it’s, like I said… I could deal with seven days. I can handle that. It’s the 28 that gets so hard.” (US-03)

Patients, 48%/Clinicians, 75%

Not meaningful for patients with pain-free or “mild” pain days as these would “dilute” the score, causing some patients’ conditions to appear less severe

Not meaningful for patients that would like treatment to address the “most severe” pain days

 “I think it would downplay how severe the pain is with endometriosis if you had somebody that the other four weeks were cool and tolerable and really didn't have to take much, but that first week was horrible.” (US-04)

Score C: percentage of days with pain ≥ 7

Patients, 28%/clinicians, 50%

Meaningful for patients with significant pain for > 7 days a month and lower pain for the remaining days

Meaningful for patients that would like treatment to address the “most severe” pain days

 “I think that’s a fair way to look at the data because if you’re scoring a seven or higher, it’s affecting your life. You’re taking medication or you can’t work or do the things that you’re supposed to be doing … So, I think saying, “Oh, 29% of the month she really had a problem,” I think that is fair.” (US-16)

Patients, 56%/clinicians, 50%

Not meaningful for patients who would also like pain scores of < 7 to be addressed by treatment

A cut-off score of 7 is too high to identify the “most painful” days for some patients

Requires all patients to use the same definition of a pain score of 7

 “It needs to be, you know, more than just those that are over 7, because a 5′s bad, you know, a 5 is a lot of pain and especially in that area because it affects your whole life. This area right here affects your standing, your sitting, your, oh, you know, it affects sex, it affects everything, so…” (US-03)

Score D: percentage of days with pain ≥ 4

Patients, 60%/clinicians, 50%

Meaningful for patients that would like treatment to address all of the days they need at least some help to manage the pain

 “…If I’m at a 7, that’s going to be bad, but even at a 4 or 5 my mood is different, my demeanor is different. I’m not getting up and […] fixing my hair, you know. My hair is going in a messy band and I’m going to put my pajama pants on. The 4 and above affects your life more than just a seven or above.” (US-03)

Patients, 32%/clinicians, 50%

Not meaningful for patients that consider any pain to meaningful; this method would not capture days with pain scores 1–3

 “…I think that paying attention to any pain at any level is important.” (US-02)