Of the 2532 women who were contacted, 1378 women replied to our initial contact letter or survey. Of these 337 refused to participate and 1041 (41%) completed our survey. 47% of participants completed it online and 53% on paper. Reasons for declining included: a request to be removed from all cancer registry studies, no interest in further childbearing, the topic of infertility was too emotionally difficult to discuss, or the survey was too long. The average time to complete the survey was 26 minutes. Of the 1041 women who completed the survey, 918 reported treatment with the potential to compromise their fertility and were included in QOL analyses.
shows comparisons of the 1041 responders and 1491 non-responders, based on disease and demographic data in the cancer registry. Patients who completed the survey were 1.4 years younger at diagnosis than those who did not (P<0.0001), and were diagnosed with more aggressive cancers, as indicated by a SEER summary stage index (range of 0 (in situ) to 7 (metastatic)) of 3.7 vs. 3.4 (P=0.0008). There were no differences between responders and non-responders in socioeconomic status (calculated from median income and education for the census block group of residence at diagnosis, P=0.8) or years since diagnosis (P=0.2).
Comparison of survey responders versus non-responders*
The age and childbearing desires of the 918 participants who reported treatment with potential to affect fertility are listed in . Patients with a history of breast and gastrointestinal cancers tended to be oldest at diagnosis and most likely to have had children before treatment. Depending on the type of cancer, between 47–63% of respondents reported desiring to have children after treatment, with the highest rates among women with leukemia (59%) and Hodgkin’s (63%). These latter two groups were also composed of women with the lowest mean ages.
Characteristics of women reporting treatment with potential to impact fertility
Prevalence of Counseling and Action
Of the 918 patients who reported treatment with the potential to affect fertility, 560 (61%) were counseled about potential reproductive loss by a member of the oncology team. Overall, 46 of the 918 women (5%) visited a fertility specialist, and 36 women (4%) took action to preserve their fertility. Eight preserved embryos; nine preserved eggs; one had an oophoropexy; and 18 used ovarian suppression therapy under the care of a fertility specialist.
Of the 560 women who were counseled by their oncology team, 505 (90%) were only counseled by the oncology team and took no further action (i.e., neither visited fertility specialist nor preserved fertility). 40 women (7%) were counseled by the oncology team and went on the visit a fertility specialist. 30 women (5%) who received counseling from the oncology team went on to pursue fertility preservation. These latter two groups of women were used to examine the QOL impact of pursuing further counseling and fertility preservation beyond being counseled by the oncology team alone.
Odds of Pursuing Fertility Preservation
Of the 918 women who had treatment with potential to impact fertility, those less than 35 years old at diagnosis were more likely to preserve their fertility than older women (OR 11.0, 95% CI 1.5–81.9). Women without children at diagnosis were more likely to take action to preserve their fertility than those with children (OR 4.6, 95% CI 1.6–13.5).
Satisfaction with Life
We found no significant differences in SWLS between women who were counseled about their risk of infertility by the oncology team compared to those who were not (20.2 vs. 19.8, P=0.57; ). However, there was a trend toward SWLS being improved by as many as 3 points when women who were counseled by an oncology team also went on to see a fertility specialist (23.0 vs. 19.8, P=0.09; ). This trend remained after controlling for cancer type as well as age and parity at diagnosis. Furthermore, women who were counseled by an oncologist and took action to preserve their fertility were found to have an even greater improvement in SWLS scores than those women who were only counseled about infertility by an oncologist (24.0 vs. 19.8, P=0.05).
The impact of receiving counseling from the oncology team about risks of cancer treatment to future fertility
Additional quality of life impacts associated with consulting a fertility specialist or pursuing fertility preservation after previous infertility counseling by the oncology team
Quality of life
Women who had been counseled by their oncology team had slightly higher physical WHOQOL-BREF subscale scores compared to those who were not counseled though this difference was no longer seen after adjusting for age, cancer type, and parity (16.3 vs. 15.8, P=0.12; ). Women who were counseled by an oncologist and visited a fertility specialist had significantly higher physical domain scores than those women who were counseled by an oncologist, but did not see a fertility specialist (17.7 vs. 16.2, P=0.01; ), and this remained significant after adjustment for other potential confounders. Women who were counseled by an oncologist and who preserved their fertility also had significantly higher physical domain scores than women who received only infertility counseling by their oncologist (17.6 vs. 16.2). This relationship remained a trend after controlling for age, cancer type, and parity (P=0.08).
In the domain of psychological health, a significant difference was noted only between women who had been counseled by their oncology team compared to those who had not (15.7 vs. 15.3, P=0.03; ) and this difference remained a trend after controlling for confounders (P=0.08; ). Women who had been seen by a fertility specialist (17.0 vs. 16.3, P=0.09) and those that had taken action to preserve their fertility (17.2 vs. 16.3, P=0.09) each showed trends toward higher environmental subscale scores versus those who were counseled about infertility by an oncologist but who did not do either of these things. Again, these trends remained regardless of age, cancer type, or parity at diagnosis. No statistically significant differences were noted in the social domain.
Receiving counseling from a fertility specialist and preserving fertility both appear to decrease regret. Women counseled about their risk of infertility from cancer therapy by both an oncology team and a fertility specialist had significantly less regret about their decision to preserve fertility than those counseled only by an oncology team (DRS = 8.4 vs. 11.0, P<0.0001; ). Among those women who were counseled by their oncologist, the largest difference in regret was noted between women who took action to preserve their fertility and those who did not (DRS = 6.6 vs. 11.0, P<0.0001). These differences remained significant after adjustment for age at diagnosis, cancer type, and parity at diagnosis.