scholarly journals Insufficient fertility counseling and decisional regret: a call to raise our standards for fertility preservation counseling prior to gender-affirming care

2021 ◽  
Vol 115 (4) ◽  
pp. 901-902
Author(s):  
Amanda R. Schwartz ◽  
Molly B. Moravek
Keyword(s):  
Fertility Preservation ◽  
Fertility Counseling ◽  
Decisional Regret

scholarly journals Decisional Regret in Female Oncofertility Decision Making—An Integrative Narrative Review

Cancers ◽  
2021 ◽  
Vol 13 (19) ◽  
pp. 4735
Author(s):  
Vânia Gonçalves
Keyword(s):  
Fertility Preservation ◽  
Young Women ◽  
Decisional Conflict ◽  
Narrative Review ◽  
Reproductive Age ◽  
Childbearing Age ◽  
Fertility Decisions ◽  
Pubmed Database ◽  
Fertility Counseling ◽  
Decisional Regret

It is well established that fertility is an important issue for young women with cancer at reproductive age, as many have not initiated or completed their parenthood goals when diagnosed. Because cancer treatments may impair fertility, women face fertility decisions that are often complex and surrounded by uncertainty. This may put patients at risk for psychological distress and the experience of regret regarding decisions made at diagnosis, which may be associated with a negative impact on women’s QoL. This narrative review addresses current knowledge about decisional regret regarding fertility preservation decisions in adult female cancer patients at reproductive age. Electronic searches were conducted on Pubmed database for articles published in English from 1 January 2000 to 1 July 2021 that assessed decisional regret following fertility decisions in young women diagnosed at childbearing age. Of the 96 articles identified, nine provided information on decisional regret regarding fertility decisions. Studies reported that, overall, decisional regret regarding oncofertility decisions was low. Factors associated with the experience of decisional regret were patients’ perceived quality and satisfaction with fertility counseling received, the decision to undergo fertility preservation, desire for children and decisional conflict. Health providers should be aware of the factors that are potentially modifiable and prone to improvement in order to reduce decisional regret. All efforts should be made to improve availability of and access to tailored high quality fertility counseling and fertility preservation. Given the growing evidence that decision aids (DAs) are effective in increasing knowledge and reducing decisional conflict and regret, their use in a routine and timely manner to complement fertility counseling is recommended.

scholarly journals Fertility preservation and decisional regret in young breast cancer survivors: A longitudinal analysis.

2017 ◽  
Vol 35 (5_suppl) ◽  
pp. 106-106
Author(s):  
Samantha Rose Dewald ◽  
Loki Natarajan ◽  
Irene Su
Keyword(s):  
Breast Cancer ◽  
Cancer Survivors ◽  
Fertility Preservation ◽  
Repeated Measures ◽  
Breast Cancer Survivors ◽  
Ovarian Function ◽  
Future Fertility ◽  
Young Breast Cancer ◽  
Decisional Regret ◽  
Over Time

106 Background: Fertility is important to many young breast cancer survivors (YBCS), who face difficult decisions on whether to undergo fertility preservation prior to treatment. Because few longitudinal data assessing decisional regret are available, the objectives of this study were to assess longitudinal changes in decisional regret on fertility preservation following breast cancer diagnosis; determine if fertility preservation treatment decisions are related to decreased decisional regret. Methods: From 3 academic breast cancer programs, 169 YBCS younger than age 45 were recruited at diagnosis between 2009 and 2012 and followed prospectively for ovarian function. Participants completed questionnaires on fertility preservation choices and the Decisional Regret Scale (DRS) during study visits every 6 months for up to 5 years. DRS is scored 0 (no regret) to 100 (highest regret). DRS was dichotomized as none versus any decisional regret. Generalized linear models estimated the change in DRS over time and the association between patient characteristics and DRS. Results: Mean age at diagnosis was 38.7 (SD 4.8). Median total follow-up was 176 days (IQR 84 to 1415 days). Enrollment DRS was available for 89 women; 48% reported decisional regret about fertility preservation (median DRS=20). Participants worried about future fertility were more likely to report decisional regret (p=0.009). 31% underwent fertility preservation, but this was not associated with decisional regret (p=0.65). In repeated measures analysis for the entire cohort, no significant change in DRS occurred over this time period (OR 0.8, 95% CI 0.4-1.7). Worry about future fertility remained significantly associated with DRS over time (OR 55.1, 95% CI 7.7-395.1). Conclusions: In a cohort of YBCS, experiencing decisional regret about fertility preservation persists for years after diagnosis. Those worried about future fertility are more likely to experience decisional regret regarding fertility preservation.

scholarly journals Pretreatment fertility counseling and fertility preservation improve quality of life in reproductive age women with cancer

Cancer ◽  
2011 ◽  
Vol 118 (6) ◽  
pp. 1710-1717 ◽  
Author(s):  
Joseph M. Letourneau ◽  
Erin E. Ebbel ◽  
Patricia P. Katz ◽  
Audra Katz ◽  
Wei Z. Ai ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Fertility Preservation ◽  
Reproductive Age ◽  
Improve Quality ◽  
Reproductive Age Women ◽  
Fertility Counseling

Patient satisfaction is best predicted by low decisional regret among women with cancer seeking fertility preservation counseling (FPC)

2014 ◽  
Vol 102 (3) ◽  
pp. e162 ◽  
Author(s):  
S.-W. Chan ◽  
D. Cipres ◽  
A. Katz ◽  
E.E. Niemasik ◽  
C.-N. Kao ◽  
...  
Keyword(s):  
Patient Satisfaction ◽  
Fertility Preservation ◽  
Decisional Regret

Onco-fertility care in a children's hospital: A quality improvement initiative.

2013 ◽  
Vol 31 (31_suppl) ◽  
pp. 41-41
Author(s):  
Masanori Hayashi ◽  
Catherine Michelle Albert ◽  
Alexandra Gubin ◽  
Ann Katz ◽  
Cara Kramer ◽  
...  
Keyword(s):  
Fertility Preservation ◽  
Pediatric Oncology ◽  
Baseline Survey ◽  
Quality Improvement Initiative ◽  
Team Approach ◽  
Cross Sectional ◽  
Non Invasive ◽  
Fertility Counseling ◽  
Practice Standard

41 Background: Patients who will receive gonadotoxic cancer therapy should be counseled on fertility risks and be offered appropriate fertility preservation methods. Previous studies have shown low adherence to these quality measures. At Johns Hopkins Pediatric Oncology, a baseline survey revealed that only 70% of patients or their parents recalled receiving fertility counseling at initial diagnosis, and 50% of eligible patients were referred for fertility preservation procedures. Methods: A multidisciplinary group comprising Pediatric Oncology physicians, nurses, and social workers was formed to address barriers to appropriate oncofertility care. The team identified staff education, a practice standard, and familiarity with fertility preservation resources as needs. Many active resources were available, such as a pediatric ovarian cryopreservation research protocol. Results: Comprehensive fertility counseling and preservation practices for boys and girls were established to provide guidance and resources to the treating primary oncology team. Girls are risk stratified according to the planned therapy for their disease, and offered ovarian or oocyte cryopreservation if therapy carries an intermediate to high risk of fertility loss. Non-invasive sperm banking is recommended for all post-pubertal males who will receive therapy with any degree of gonadotoxicity. An oncofertility team provides 24/7 consultation for the primary oncology team and patients and proactively identifies newly diagnosed patients who need counseling. The comprehensive protocol has been published on the online center-wide policy repository, and the consult service has been frequently utilized. A cross-sectional questionnaire study will be performed annually to monitor compliance to protocol and quality of care. Conclusions: A proactive team approach can overcome barriers to quality oncofertility practice.

scholarly journals Attitudes toward fertility and fertility preservation in women with glioma

2018 ◽  
Vol 6 (3) ◽  
pp. 218-225 ◽  
Author(s):  
Rachel K Stiner ◽  
Jennifer L Clarke ◽  
Nikita Sinha ◽  
Jessica Chan ◽  
Joseph M Letourneau ◽  
...  
Keyword(s):  
Fertility Preservation ◽  
San Francisco ◽  
Survey Analysis ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Fertility Counseling ◽  
Survey Results ◽  
Chemotherapy Initiation ◽  
After Cancer ◽  
The University

Abstract Background No studies have examined the fertility priorities of women undergoing treatment for their glioma. Glioma patients frequently undergo chemotherapy as part of their treatment; however, it is unknown whether patients truly are aware of its possible effects on their fertility. Our objective was to assess the fertility priorities of glioma patients and ascertain whether female glioma patients are being effectively counseled on the effects of chemotherapy on their fertility prior to beginning treatment. Methods The sample was composed of female patients from the Neuro-oncology clinic of the University of California, San Francisco. Participants completed a cross-sectional survey between October 2010 and December 2013 exploring their attitudes toward fertility and their experience with fertility counseling prior to chemotherapy initiation. Results Seventy-two women completed the survey. Analysis of the survey results showed that 30% of women receiving chemotherapy reported having a discussion regarding fertility preservation prior to beginning treatment. Of those who reported having this discussion, 80% were aware that chemotherapy could negatively affect their fertility. Many women reported that while fertility preservation was not important to them at the time of diagnosis, it was a priority for them at the time of survey completion. Although interest in having children tended to decrease after cancer treatment, the majority of respondents reported wanting a child after treatment. Conclusions The data obtained in this study suggest a lack of understanding of reproductive priorities, which may be addressed with a more comprehensive fertility discussion prior to beginning treatment.

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