BACKGROUND: The post-treatment quality of life (QOL) impacts of receiving precancer-treatment infertility counseling and of pursuing fertility preservation have not been described in large-scale studies of reproductive age women with cancer. METHODS: In total, 1041 women who were diagnosed between ages 18 and 40 years responded to a retrospective survey and reported whether they received infertility counseling before cancer treatment and whether they took action to preserve fertility. Five cancer types were included: leukemia, Hodgkin disease, non-Hodgkin lymphoma, breast cancer, and gastrointestinal cancer. Validated QOL scales were used: the Decision Regret Score, the Satisfaction with Life Scale (SWLS), and the brief World Health Organization QOL questionnaire. RESULTS: Overall, 560 women (61%) who received treatment that potentially could affect fertility were counseled by the oncology team, 45 (5%) were counseled by fertility specialists, and 36 (4%) took action to preserve fertility. Pretreatment infertility counseling by a fertility specialist and an oncologist resulted in lower regret than counseling by an oncologist alone (8.4 vs 11.0; P < .0001). The addition of fertility preservation (6.6 vs 11.0; P < .0001) also was associated with even lower regret scores than counseling by an oncologist alone. Further improvements also were observed in SWLS scores with the addition of fertility specialist counseling (23.0 vs 19.8; P = .09) or preserving fertility (24.0 vs 19.0; P = .05). CONCLUSIONS: Receiving specialized counseling about reproductive loss and pursuing fertility preservation is associated with less regret and greater QOL for survivors, yet few patients are exposed to this potential benefit. Women of reproductive age should have expert counseling and should be given the opportunity to make active decisions about preserving fertility.
BACKGROUND: The post-treatment quality of life (QOL) impacts of receiving precancer-treatment infertility counseling and of pursuing fertility preservation have not been described in large-scale studies of reproductive age women with cancer. METHODS: In total, 1041 women who were diagnosed between ages 18 and 40 years responded to a retrospective survey and reported whether they received infertility counseling before cancer treatment and whether they took action to preserve fertility. Five cancer types were included: leukemia, Hodgkin disease, non-Hodgkin lymphoma, breast cancer, and gastrointestinal cancer. Validated QOL scales were used: the Decision Regret Score, the Satisfaction with Life Scale (SWLS), and the brief World Health Organization QOL questionnaire. RESULTS: Overall, 560 women (61%) who received treatment that potentially could affect fertility were counseled by the oncology team, 45 (5%) were counseled by fertility specialists, and 36 (4%) took action to preserve fertility. Pretreatment infertility counseling by a fertility specialist and an oncologist resulted in lower regret than counseling by an oncologist alone (8.4 vs 11.0; P < .0001). The addition of fertility preservation (6.6 vs 11.0; P < .0001) also was associated with even lower regret scores than counseling by an oncologist alone. Further improvements also were observed in SWLS scores with the addition of fertility specialist counseling (23.0 vs 19.8; P = .09) or preserving fertility (24.0 vs 19.0; P = .05). CONCLUSIONS: Receiving specialized counseling about reproductive loss and pursuing fertility preservation is associated with less regret and greater QOL for survivors, yet few patients are exposed to this potential benefit. Women of reproductive age should have expert counseling and should be given the opportunity to make active decisions about preserving fertility.
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