Background As cancer treatments continue to improve, it is increasingly important that women of reproductive age have an opportunity to decide whether they want to undergo fertility preservation treatments to try to protect their ability to have a child after cancer. Clinical practice guidelines recommend that providers offer fertility counseling to all young women with cancer; however, as few as 12% of women recall discussing fertility preservation. The long-term goal of this program is to develop an interactive web-based patient decision aid to improve awareness, access, knowledge, and decision making for all young women with cancer. The International Patient Decision Aid Standards collaboration recommends a formal decision-making needs assessment to inform and guide the design of understandable, meaningful, and usable patient decision aid interventions. Objective This study aims to assess providers’ and survivors’ fertility preservation decision-making experiences, unmet needs, and initial design preferences to inform the development of a web-based patient decision aid. Methods Semistructured interviews and an ad hoc focus group assessed current decision-making experiences, unmet needs, and recommendations for a patient decision aid. Two researchers coded and analyzed the transcripts using NVivo (QSR International). A stakeholder advisory panel guided the study and interpretation of results. Results A total of 51 participants participated in 46 interviews (18 providers and 28 survivors) and 1 ad hoc focus group (7 survivors). The primary themes included the importance of fertility decisions for survivorship, the existence of significant but potentially modifiable barriers to optimal decision making, and a strong support for developing a carefully designed patient decision aid website. Providers reported needing an intervention that could quickly raise awareness and facilitate timely referrals. Survivors reported needing understandable information and help with managing uncertainty, costs, and pressures. Design recommendations included providing tailored information (eg, by age and cancer type), optional interactive features, and multimedia delivery at multiple time points, preferably outside the consultation. Conclusions Decision making about fertility preservation is an important step in providing high-quality comprehensive cancer care and a priority for many survivors’ optimal quality of life. Decision support interventions are needed to address gaps in care and help women quickly navigate toward an informed, values-congruent decision. Survivors and providers support developing a patient decision aid website to make information directly available to women outside of the consultation and to provide self-tailored content according to women’s clinical characteristics and their information-seeking and deliberative styles.
BACKGROUND As cancer treatments continue to improve, it is increasingly important that reproductive-aged young women have an opportunity to decide whether they want to undergo fertility preservation treatments to try to protect their ability to have a child after cancer. Clinical practice guidelines recommend that providers offer fertility counseling to all young women with cancer, but as few as 12% of women recall discussing fertility preservation. Patients report limited awareness, opportunity, and time to make this complex personal decision. The long-term goal of this program of research is to develop an interactive webbased patient decision aid to improve awareness, access, knowledge, and decision making for all young women with cancer. The International Patient Decision Aid Standards collaboration recommends a formal decisional needs assessment to inform and guide the design of understandable, meaningful, and usable patient decision aid interventions. OBJECTIVE This study assessed providers’ and survivors’ fertility preservation decision-making experiences, unmet needs, and design preferences to inform the development of a web-based patient decision aid. METHODS Semi-structured interviews and an ad hoc focus group assessed current decision-making experiences, unmet needs, and recommendations for a patient decision aid. Two researchers coded and analyzed transcripts using NVIVO. A stakeholder advisory panel guided the study and interpretation of results. RESULTS A total of 51 participants participated in 46 interviews (n=18 providers and 28 survivors) and 1 ad hoc focus group (n=7 survivors). Primary themes included (1) the importance of fertility decisions for survivorship, (2) significant but potentially modifiable barriers to optimal decision making exist, and (3) there is strong support for developing a patient decision aid website. Providers reported needing an intervention that could quickly raise awareness and facilitate timely referrals. Survivors reported needing understandable information and help with managing uncertainty, costs, and pressures. Design recommendations included: providing tailored information (eg, by age and cancer type), optional interactive features, and multimedia delivery at multiple time points, preferably outside the consultation. CONCLUSIONS Decision making about fertility preservation is an important step in providing high-quality comprehensive cancer care, and a priority for many survivors’ optimal quality of life. Decision support interventions are needed to address gaps in care and help women quickly navigate towards an informed, values-congruent decision. Survivors and providers support developing a patient decision aid website to make information directly available to women outside of the consultation and to provide self-tailored content according to women’s clinical characteristics and their information-seeking and deliberative styles. CLINICALTRIAL Not applicable
Background Adenomyosis remains an enigma for the reproductive endocrinologist. It is thought to contribute to sub-fertility, and its only curative treatment is hysterectomy. However, studies have documented increased live birth rates in women with adenomyosis who were treated with gonadotropin releasing hormone agonist (GnRHa). Case Here we present a case of a 52-year-old woman with adenomyosis who had three failed frozen embryo transfers (FETs) prior to initiating a 6-month trial of GnRHa. GnRHa therapy resulted in a decrease in uterine size from 11.5 × 7.9 × 7.0 cm to 7.8 × 6.2 × 5.9 cm and a decrease in the junctional zone (JZ) thickness from 19 to 9 mm. Subsequently, she underwent her fourth FET, which resulted in live birth of twins. The delivery was complicated by expansive accretas of both placentas requiring cesarean hysterectomy. The final pathology of the placentas demonstrated an extensive lack of decidualized endometrium that was even absent outside the basal plate. Conclusions GnRHa therapy in patients with adenomyosis may improve implantation rates after FET. Previous molecular studies indicate that genetic variance in the expression of the gonadotropin releasing hormone receptor (GnRHR) could explain the expansive lack of decidualized endometrium after GnRHa therapy. Further investigations are needed to determine if GnRHa therapy contributes to the pathologic process of placenta accreta.
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