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Table 5 Self-reported primary infertility diagnosis at ART-FS compared to clinical recorda

From: Self-reported infertility diagnoses and treatment history approximately 20 years after fertility treatment initiation

  Primary diagnosis from clinical records only Any diagnosis from clinical record (primary, secondary, other)
Infertility diagnosis   Cohen’s kappa Κ (95% CI) Sensitivity (95% CI) Specificity (95% CI)   Cohen’s kappa Κ (95% CI) Sensitivity (95% CI) Specificity (95% CI)
Any female factor infertilityb ART-FS recall 0.41 (0.35, 0.48) 0.72 (0.67, 0.76) 0.70 (0.66, 0.74) ART-FS recall 0.37 (0.30, 0.43) 0.66 (0.61, 0.70) 0.71 (0.67, 0.76)
Clinical records   + Clinical records   +
+ 256 102 + 281 146
130 303 105 259
PCOS ART-FS recall 0.31 (0.18, 0.44) 0.39 (0.24, 0.54) 0.95 (0.94, 0.97) ART-FS recall 0.35 (0.23, 0.48) 0.38 (0.25, 0.51) 0.96 (0.94, 0.97)
Clinical records   + Clinical records   +
+ 16 25 + 21 30
35 715 34 706
Endometriosis ART-FS recall 0.48 (0.38, 0.57) 0.46 (0.37, 0.56) 0.96 (0.94, 0.97) ART-FS recall 0.42 (0.34, 0.51) 0.38 (0.30, 0.46) 0.96 (0.95, 0.98)
Clinical records   + Clinical records   +
+ 51 59 + 58 94
29 652 22 617
Uterine factor infertility ART-FS recall 0.01 (−0.07, 0.09) 0.06 (< 0.01, 0.16) 0.96 (0.95, 0.97) ART-FS recall 0.02 (−0.06, 0.10) 0.06 (< 0.01, 0.14) 0.96 (0.94, 0.97)
Clinical records   + Clinical records   +
+ 1 17 + 2 32
31 742 30 727
Tubal factor infertility ART-FS recall 0.62 (0.54, 0.70) 0.54 (0.46 0.63) 0.98 (0.98, 0.99) ART-FS recall 0.39 (0.32, 0.46) 0.33 (0.27, 0.39) 0.99 (0.98, 1.00)
Clinical records   + Clinical records   +
+ 72 61 + 76 157
10 648 6 552
Diminished ovarian reserve/ Increased maternal age ART-FS recall 0.07 (<−0.01, 0.14) 0.28 (0.17, 0.40) 0.83 (0.80, 0.86) ART-FS recall 0.06 (−0.01, 0.14) 0.25 (0.16, 0.35) 0.83 (0.80, 0.86)
Clinical records   + Clinical records   +
+ 16 40 + 21 62
125 610 120 588
Male factor infertility   ART-FS recall 0.66 (0.61, 0.72) 0.67 (0.61, 0.72) 0.96 (0.94, 0.97)   ART-FS recall 0.61 (0.55, 0.66) 0.60 (0.55, 0.65) 0.97 (0.96, 0.99)
Clinical records   + Clinical records   +
+ 184 91 + 195 130
23 493 12 454
Other/ Unknown ART-FS recall 0.30 (0.22, 0.38) 0.51 (0.43, 0.59) 0.82 (0.78, 0.84) ART-FS recall 0.29 (0.21, 0.36) 0.49 (0.41, 0.56) 0.82 (0.78, 0.85)
Clinical records   + Clinical records   +
+ 81 77 + 84 88
117 516 114 505
  1. ART-FS AfteR Treatment Follow-up Study, PCOS polycystic ovarian syndrome
  2. a Self-report at IVF Study enrollment used as gold standard to calculate specificity and sensitivity
  3. b Any female factor infertility includes at least one of: PCOS, endometriosis, uterine factor infertility, tubal factor infertility, or diminished reserve/advanced age
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