Table II.
Physician, surgical, and pathology record receipt and confirmation proportions by cohort.
| Cohort | BWHS | E3N | GUTS |
NHSII
first wave |
NHSII
second wave |
|---|---|---|---|---|---|
| Baseline population | 59 001 | 98 995 | 15 044 | 116 429 | 116 429 |
| Years in which endometriosis was self-reported | 1995–2013 | 1990–2005 | 2005–2016 | 1989–1993 | 1989–2007 |
| Years when participants were contacted for validation | 2008–2016 | 2007 | 2011–2017 | 1996 | 2009–2011 |
| Eligible women who self-reported endometriosis (N) | 1605 | 558 | 491 | 1766 | 711 |
| Contacted for medical record review (N) | 1605 | 200 | 380 | 200 | 711 |
| Unable to contact/never responded1 | 1128 | — | 139 | 16 | 169 |
| Denied diagnosis on consent form | 200 | — | 64 | 3 | 77 |
| Confirmed diagnosis but not access to medical records2 | — | — | 61 | 32 | 15 |
| Permission obtained to review medical records3 | 277 (19.7%) | 183 (91.5%) | 116 (36.7%) | 149 (75.6%) | 360 (56.8%) |
| Medical records never received | 52 | 0 | 27 | 17 | 132 |
| Inadequate information received4 | 0 | 15 | 4 | 0 | 11 |
| Relevant medical records received and reviewed | 225/277 (81.2%) | 168/183 (91.8%) | 85/116 (73.3%) | 132/149 (88.6%) | 217/360 (60.3%) |
| Found no clinical diagnosis and no surgery performed | 18 | — | 4 | 12 | 3 |
| Clinical diagnosis noted but no surgery performed5 | 28 | — | 16 | 14 | 4 |
| Surgically confirmed | 134 | 137 | 63 | 98 | 185 |
| Clinical diagnosis noted but disconfirmed at surgery6 | 0 | — | 2 | 8 | 2 |
| Found no clinical diagnosis and disconfirmed at surgery | 45 | — | 0 | 0 | 8 |
| Pathology-confirmed but not visualized at surgery | 0 | — | 0 | 0 | 9 |
| Pathology-confirmed but no surgical report obtained | 0 | — | 0 | 0 | 6 |
| Overall confirmation proportion 7 | 162/225 (72.0%) | 137/168 (81.5%) | 81/85 (95.3%) | 112/132 (84.8%) | 206/217 (94.9%) |
| Surgically confirmed proportion8 | 134/179 (74.9%) | 137/168 (81.5%) | 63/65 (96.9%) | 98/106 (92.5%) | 185/204 (90.7%) |
| Clinically confirmed proportion9 | 18/28 (64.3%) | — | 16/20 (80.0%) | 14/26 (53.8%) | 4/7 (57.1%) |
Number of participants we were either unable to contact or never responded to repeated mailings.
These participants confirmed their endometriosis diagnosis but either denied access to their medical records or did not respond to requests for access.
The percentage providing permission to obtain medical records was calculated out of the total contacted minus those who denied their endometriosis diagnosis.
Reasons inadequate information was received for medical records included no information on disease history and symptoms or medical records not relating to primary care physician, surgeon or gynecologic visits.
Evidence found in the medical records that the participant had been told by her clinician that she most likely had endometriosis but no evidence that she ever had surgery to confirm her diagnosis.
The eight surgically disconfirmed endometriosis cases in the NHSII first wave were all clinically confirmed (found documentation that the woman was told by her clinician that she most likely had endometriosis) and included in the overall and the clinically confirmed proportion.
The numerator of this measure includes those who were surgically confirmed and clinically confirmed.
The denominator of this measure includes those who had evidence of surgery in their medical records.
The denominator of this measure includes those who did not have evidence of surgery in their medical records.