Table 1.
Studies addressing decisional regret regarding fertility decisions of women at reproductive age diagnosed with cancer.
| Study | Origin | Type | Aims | Sample | Study Design | Decisional Regret Measures | Relevant Findings about Decisional Regret |
|---|---|---|---|---|---|---|---|
| Letoruneau et al. [24] | USA | Quantitative | - To evaluate whether receiving pre-cancer treatment infertility counseling from an oncology team is associated with improved post-treatment QOL. - To evaluate whether seeing a fertility doctor or taking action to preserve fertility is associated with even greater improvements in QOL than only receiving counseling from the oncology team. |
- N = 918 - Mixed diagnosis (Hodgkin’s lymphoma most prevalent—N = 286) - Mean age at dx: 31.5 - Mean age at survey: 40.9 - Mean length time since diagnosis: 9.8 years - 52% had children before TX - 54% desired children after TX |
Cross-sectional | DRS—to measure the decision to undergo (or not) FP | - Mean (SD) decision regret score (women received counseling only from oncologist): 11 (5) - Mean (SD) decision regret score (women who receive counseling from oncologist + fertility specialist): 8.4 (4.4) - Receiving counseling from a fertility specialist and FP appears to decrease regret. - Women counseled about fertility by both an oncology team and a fertility specialist had significantly less regret about their FP decision than those counseled only by an oncology team - Among those women who were counseled by their oncologist, the largest difference in regret was noted between women who took action to preserve their FP and those who did not. These differences remained significant after adjustment for age at diagnosis, cancer type, and parity at diagnosis. |
| Basting et al. [25] | The Netherlands | Quantitative | - To investigate how female patients experienced FP consultation and FP decision-making. - To investigate the interplay between patients’ FP consultation experiences, decisional conflict and decision regret. |
- N = 64 - Mixed diagnosis (Breast cancer most prevalent—60%) - Mean age: 28.9 - Mean age at survey: 40.9 - Follow-up mean: 2 years - 90% had a partner - 15% had children |
Cross-sectional | DRS—to measure past FP decisions | - Median score on the decision regret scale: 8 - Decisional conflict was significantly related to decisional regret. Women who recalled decisional conflict at the time of diagnosis were significantly more likely to have current decisional regret. Similar results were obtained in a sub-sample of patients who were counseled since 2011 and who did not attempt to conceive after fertility counseling. |
| Benedict et al. [26] | USA | Quantitative | - To evaluate the decisions young adult female cancer survivors made about FP before treatment - To understand the extend of decision regret related to FP after TX - To compare characteristics of patients who preserved their fertility to those who did not - To identify factors related to increased regret among survivors. |
- N = 159 - Mean age at TX: 33 - at least 1 year from TX (56%) - Mixed diagnosis (Breast cancer most prevalent—17%) - 81% had partner - 41% had at least 1 child before TX - 62% wanted children in future |
Cross-sectional | DRS—to measure the decision to undergo (or not undergo) FP before treatment |
- Average decision regret score: 10, low regret overall (SD = 4.4; median = 10; range 5–25) - Women who preserved their fertility had lower regret scores compared to those who did not. - Decisional regret was not related to age at diagnosis or current age, race or ethnicity, partner status, prior children, treatment type and time since TX. - Among women who did not undergo FP: 61% felt they made the right decision; 26% regretted their choice; 19% would not make the same choice again. - Among women who pursued FP: 84% felt they made the right decision; 10% regretted their choice; 6% would not make the same choice again. - Decision regret among those who did not undergo FP: Greater for those who expressed lack of time and emotional distress as reasons for not pursuing PF compared to women who did not report these reasons; not wanting children was related to less regret; pre-fertility counseling was associated with less regret at a trend level. |
| Chan et al. [27] | USA | Quantitative | - To compare regret in GYN cancer survivors who did and did not recall pre-TX fertility counseling - Secondary aim to evaluate the effect of FSS on regret and to characterize patients at highest risk of regret |
- N = 470 - 228 (48.5%) cervical, 125 (26.6%) ovarian, 117 (24.9%) endometrial - Mean age at dx: 33.7 - Mean age at survey: 45.2 - 324 (69%) had children before TX - 235 (50%) desired children after TX |
Cross-sectional | DRS—to measure regret following cancer treatment | - After adjusting for age at time of DX and at time of survey, counseling (p = 0.02) and FSS (p = 0.03) were associated with lower regret scores - Desire for more children at time of DX was associated with higher regret (p < 0.001 adjusted) |
| Melo et al. [28] | Portugal | Quantitative | - To assess female cancer patients’ perceptions of FP decision-making - To examine the effects of clinicians’ support on decision quality. |
- N = 71 - Mean age at TX: 31.42 - Mixed diagnosis (Breast cancer most prevalent—74.6%) - 75.7% had partner - 19.7% had at least 1 child before TX |
Prospective, longitudinal (T1: when participants required to make fertility decision; T2: End of TX) | DRS—to measure current regret about fertility decisions | - Mean (SD) decision regret score: 1.40 (0.59), Min: 1.00, max: 3.60 - At T2, low decisional regret and high decisional satisfaction. - Higher decisional regret about FP decision was strongly associated with less decisional satisfaction. - Participants who decided not to pursue FP had higher regret at T2 and lower decisional satisfaction than those who decided to undergo FP. - Higher regret was moderately associated with more perceived pressure to select a specific option at T1 and T2 and with less perceived time available to make a decision at T2, and regret was strongly associated with less certainty about the decision at T2 |
| Campbel and Hillemeier [29] | USA | Quantitative | - To examine whether fertility counseling provided to pre-menopausal breast cancer patients is associated with decreased decisional regret post-treatment and whether the effects of fertility counseling receipt are influenced by information adequacy. | - N = 128 breast cancer - Mean age at diagnosis: 32.14 - Mean age at study: 37.69 - 70.19% were married |
Cross-sectional | DRS—to measure breast cancer treatment choices regarding the effects they had on survival and fertility (4 items used) | - Mean (SD) decision regret score: 1.59 (0.07) - Women who received fertility counseling had a higher regret score than women who did not received counseling (difference marginally significant: p = 0.07) - Fertility counseling was not directly associated with decisional regret. - Fertility information adequacy was significantly associated with the relationship between fertility counseling and regret. Regret scores were significantly reduced when women receive more adequate fertility information after finishing treatment or before and after finishing treatment compared to women receiving less adequate information. |
Abbreviations: TX, cancer treatment; DX, cancer diagnosis; GYN, gynecologic cancer; FP, fertility preservation; FSS, fertility-sparing surgery; QoL, quality of life; DRS, decisional regret scale; DA, decision aid.