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Table 4 Self-reported primary infertility diagnosis at ART-FS compared to self-report from IVF Studya

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

  Women who self-reported a single diagnosis at IVF study enrollment (n = 509) Women who self-reported any number of diagnoses at IVF study enrollment (n = 808)
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 0.61 (0.54, 0.68) 0.87 (0.81, 0.92) 0.79 (0.74, 0.83) ART-FS recall 0.51 (0.45, 0.57) 0.78 (0.73, 0.82) 0.74 (0.70, 0.78)
IVF Study recall   + IVF Study recall   +
+ 148 23 + 273 79
70 257 114 325
PCOS ART-FS recall 0.66 (0.51, 0.81) 0.72 (0.54, 0.90) 0.98 (0.97, 0.99) ART-FS recall 0.53 (0.42, 0.64) 0.48 (0.37, 0.60) 0.98 (0.97, 0.99)
IVF Study recall   + IVF Study recall   +
+ 18 7 + 34 36
10 463 16 705
Endometriosis ART-FS recall 0.76 (0.65, 0.86) 0.76 (0.62, 0.89) 0.98 (0.97, 0.99) ART-FS recall 0.60 (0.51, 0.68) 0.53 (0.44, 0.61) 0.98 (0.97, 0.99)
IVF Study recall   + IVF Study recall   +
+ 31 10 + 68 61
8 449 13 647
Uterine factor infertility ART-FS recall 0.07 (−0.09, 0.22) 0.17 (0.0, 0.46) 0.97 (0.95, 0.98) ART-FS recall 0.14 (0.01, 0.26) 0.16 (0.04, 0.28) 0.96 (0.95, 0.98)
IVF Study recall   + IVF Study recall   +
+ 1 5 + 6 31
17 475 25 702
Tubal factor infertility ART-FS recall 0.73 (0.64, 0.82) 0.66 (0.56, 0.77) 0.99 (0.98, 1.00) ART-FS recall 0.59 (0.51, 0.67) 0.50 (0.42, 0.58) 0.99 (0.98, 1.00)
IVF Study recall   + IVF Study recall   +
+ 53 27 + 76 77
5 413 6 632
Diminished ovarian reserve/ Increased maternal age ART-FS recall 0.25 (0.14, 0.37) 0.74 (0.54, 0.93) 0.87 (0.84, 0.90) ART-FS recall 0.31 (0.21, 0.40) 0.65 (0.51, 0.79) 0.87 (0.85, 0.90)
IVF Study recall   + IVF Study recall   +
+ 14 5 + 30 16
61 418 86 585
Male factor infertility ART-FS recall 0.82 (0.76, 0.87) 0.82 (0.76, 0.87) 0.97 (0.96, 0.99) ART-FS recall 0.65 (0.60, 0.71) 0.64 (0.59, 0.69) 0.98 (0.96, 0.99)
IVF Study recall   + IVF Study recall   +
+ 149 33 + 196 110
8 308 12 471
Other/ Unknown ART-FS recall 0.55 (0.47, 0.63) 0.62 (0.54, 0.70) 0.91 (0.88, 0.94) ART-FS recall 0.34 (0.27, 0.41) 0.48 (0.41, 0.54) 0.85 (0.82, 0.88)
IVF Study recall   + IVF Study recall   +
+ 90 55 + 115 127
33 320 84 470
  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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