Psychosocial response of infertile patients to COVID-19-related delays in care at the epicenter of the global pandemic.

BACKGROUND: The aim of this study was to describe the psychosocial response of the infertile population whose care was curtailed due to the COVID-19 pandemic. METHODS: A web-based cross-sectional survey was administered to 117 infertile patients at our Center who had their infertility treatment delayed due to suspension of care at our hospital during the COVID-19 pandemic. The survey consisted of 52-question multiple-choice questions including the Life Orientation Test-Revised (LOT-R) and the Hospital Anxiety and Depression Scale (HADS) instruments. Characteristics of respondents who "agreed" (strongly agree and agree) that "delaying treatment has permanently impacted my chances at future conception" were compared with participants who "disagreed" (neutral, disagree, and strongly disagree) using Fischer's Exact Test. RESULTS: In total, 79.5% agreed that delaying treatment has permanently impacted their chances at future conception. There were no discernible demographic differences between patients who "agreed" versus "disagreed" with the above statement. The mean LOT-R score was 14.1 (5.1) with an optimism score of 6.8 (2.6) and a pessimism score of 7.3 (2.9). The mean HADS depression score was 5.4 (3.4) with 28.2% reporting scores in the borderline-abnormal to abnormal range. The mean HADS anxiety score was 9.0 (3.9) with 64.6% reporting scores in the borderline-abnormal to abnormal range. Nearly one third of respondents (36.8%) reported wanting to "expedite/be more aggressive with treatment," whereas only 5.1% wanted to postpone treatment. CONCLUSIONS: Women undergoing ART during the COVID-19 pandemic express significant concern and signs of distress about how delays in care affect their future reproductive potential.

Parental disclosure to offspring created with oocyte donation: intentions versus reality.

STUDY QUESTION: Do parents with children created through oocyte donation (OD) follow through with their original intentions regarding disclosure to their offspring, and if not, why not? SUMMARY ANSWER: Although 43% of this study population had disclosed to their offspring as intended, 39% had delayed disclosure because of uncertainty about how and when to disclose. WHAT IS KNOWN ALREADY: Previous research studies have primarily investigated the intentions of families regarding disclosure to offspring conceived with gamete donation, but have not focused on what actually occurs in the disclosure process. STUDY DESIGN, SIZE, DURATION: Data from 72 subjects were collected utilizing a 52-item questionnaire developed by the authors from January to May 2012. This cross-sectional hypothesis-generating pilot study utilized descriptive statistics, including frequency and percentiles in order to characterize survey responses. PARTICIPANTS/MATERIALS, SETTING, METHODS: A total of 459 families who delivered a child (or children) after using OD between 1992 and 2003 were invited by mail to participate. The parents were invited to a 1-day, professionally led seminar on issues about oocyte-donation and disclosure. The study, performed at a large university-based fertility clinic, included 72 parents, representing 46 families and 66 children ranging in age from 7 to 19 years. MAIN RESULTS AND THE ROLE OF CHANCE: The findings indicate that 43% of the study population disclosed to their offspring as intended, 39% still intend to disclose, 9% are uncertain and 9% do not plan to disclose at any time. The average age of children at the time of disclosure was 5.5 years. The average age of children at the time of data collection was 13 years. Primary reasons for disclosure were the child's right to know, the desire to be open and honest, and the notion that family secrets are harmful. For families who still intend to disclose, the average age of the offspring was 11 years and primary reasons for delayed disclosure included 'never finding the right time' and uncertainty about how and when to disclose. An unanticipated finding was that delayed disclosure among those who intend to tell offspring resulted in heightened levels of parental anxiety about disclosing to older children. Demographic data showed no associations with disclosure or non-disclosure to offspring. The response rate to participation was 12%. LIMITATIONS, REASONS FOR CAUTION: Limitations of this study include a low response rate due to potential participants being lost to follow-up and to the possibility that families choosing non-disclosure did not respond to the invitation. This lack of a more effective recruitment strategy may have resulted in the smaller, self-selected study population. Additional limitations included the lack of heterogeneity of our population, any confounding factors the seminars may have had on the choice to participate in the study and on responses to the questionnaire, and the lack of a specified anxiety measurement. WIDER IMPLICATIONS OF THE FINDINGS: Families disclosing to children by the age of 8 reported the lowest levels of conflict regarding the disclosure process and the highest levels of satisfaction at having disclosed early. The findings are consistent with, and add to, a growing body of literature on disclosure in donor-assisted reproduction. The authors recommend that fertility programs and mental health providers better assist OD parents with disclosure issues by recommending early disclosure for those who plan to tell, and by providing on-going follow-up and support to ensure that disclosure decisions are implemented as originally intended. STUDY FUNDING/COMPETING INTERESTS: Partial study funding was received from an educational grant from Ferring Pharmaceuticals, Inc. There are no conflicts of interest to declare.

A cross-sectional cohort study of infertile women awaiting oocyte donation: the emotional, sexual, and quality-of-life impact.

OBJECTIVE: To examine the emotional, sexual, physical, and quality-of-life (QOL) impact on infertile women awaiting oocyte donation. DESIGN: Cross-sectional cohort study. SETTING: Cancer center and reproductive medicine center. PATIENT(S): Fifty infertile women awaiting oocyte donation, enrolled from October 2006 to February 2009. INTERVENTION(S): Woman awaiting oocyte donation completed a one-time survey of empirical measures and exploratory items. MAIN OUTCOME MEASURE(S): Reproductive concerns, depression, sexual function, distress, menopausal symptoms, physical and mental health, and relationship satisfaction. RESULT(S): Of the participants, 33% were clinically depressed (Center for Epidemiologic Studies Depression Scale), and 59% had high levels of distress (Impact of Events Scale). The cohort's mean Female Sexual Function Index score (24.09) was below the cutoff value (26.55), indicating sexual dysfunction. Relationship satisfaction (Abbreviated Dyadic Adjustment Scale) scores were comparable to the population norm. Patients had good physical QOL but below average mental QOL (Medical Outcomes SF-12 Health Survey). Sixty-four percent were concerned about long-term effects of treatment, although 94% were grateful for reproductive assistance options and described parenthood as providing enrichment, happiness, and meaning to their lives. CONCLUSION(S): Infertility can negatively impact sexual function, QOL, and emotional well-being. Quantitative empirical measures and qualitative data have shown that these women experienced and recognized the emotional toll of reproductive assistance. Despite concerns about the long-term effects of treatment, participants were grateful for this third-party parenting option.

A cross-sectional study of the psychosexual impact of cancer-related infertility in women: third-party reproductive assistance.

INTRODUCTION: This study empirically assessed emotional and sexual functioning, reproductive concerns, and quality of life (QOL) of cancer-related infertile women in comparison to those without a cancer history and explored awareness of third-party reproduction options in cancer survivors. METHODS: One hundred twenty-two cancer survivors (Gynecologic and Bone Marrow/Stem Cell Transplant) with cancer-related infertility and 50 non-cancer infertile women completed a self-report survey assessing: reproductive concerns (RCS), mood (CES D), distress (IES), sexual function (FSFI), menopause (SCL), QOL (SF 12), relationships (ADAS), and exploratory (reproductive options) items. RESULTS: Cancer survivors exhibited greater sexual dysfunction and lower physical QOL than non-cancer infertile women (P < 0.001). No significant group differences were identified for mood (CES-D), mental health QOL (SF-12), reproductive concerns (RCS), and relationship satisfaction (ADAS). All groups scored in the FSFI range of sexual dysfunction, and with RCS scores above published means. Multivariate comparisons showed comparable depression and distress levels for all groups, but cancer survivors had poorer physical QOL [F(5,146)=4.22, P < 0.01]. A significant effect was also found for knowledge of third-party reproductive options on depression and distress levels [F(3,97)=4.62,P < 0.01]. Adjusted means demonstrated higher depression and distress scores for women with perceived unmet informational needs. CONCLUSIONS: Overall, loss of fertility was an emotionally challenging experience for women regardless of its cause. Cancer survivors were found to have lower scores of physical QOL and sexual function than non-cancer infertile women. Unmet informational needs about reproductive options appeared to be associated with negative mood and increased distress in cancer survivors. IMPLICATIONS FOR CANCER SURVIVORS: Targeted interventions to increase knowledge about reproductive options could be of great assistance to women pursuing parenthood in cancer survivorship. Additionally, intervention studies to improve sexual functioning and QOL in women with cancer-related infertility should be a priority of future research.

Online psychoeducational support for infertile women: a randomized controlled trial.

BACKGROUND: The study goal was to develop and test the effectiveness of a brief online education and support program for female infertility patients. METHODS: A randomized-controlled trial was conducted. Using a Solomon-four group design, 190 female patients were recruited from three US fertility centers and were randomized into two experimental and two no-treatment control groups. The psychological outcomes assessed included infertility distress, infertility self-efficacy, decisional conflict, marital cohesion and coping style. Program dosage and satisfaction were also assessed at four weeks follow-up. RESULTS: Women exposed to the online program significantly improved in the area of social concerns (P = 0.038) related to infertility distress, and felt more informed about a medical decision with which they were contending (P = 0.037). Trends were observed for decreased global stress(P = 0.10), sexual concerns (P = 0.059), distress related to child-free living (P = 0.063), increased infertility self-efficacy (P = 0.067) and decision making clarity (P = 0.079). A dosage response was observed in the experimental groups for women who spent >60 min online for decreased global stress (P = 0.028) and increased self efficacy (P = 0.024). CONCLUSIONS: This evidence-based eHealth program for women experiencing infertility suggests that a web-based patient education intervention can have beneficial effects in several psychological domains and may be a cost effective resource for fertility practices.

Postmortem sperm retrieval: the effect of instituting guidelines.

PURPOSE: Postmortem sperm retrieval (PMSR) raises serious medical and ethical concerns. In this study we report the effect of intra-institutional guidelines developed for the permissibility of the procedure on the number of procurement procedures performed. MATERIALS AND METHODS: The family members of 22 men who died suddenly sought PMSR. We performed an institutional review board approved chart review of the requests for PMSR from 1994 to 2002. A set of guidelines addressing PMSR was developed by a panel of experts at our institution. Key elements included 1) evidence of intended paternity for the deceased man, 2) next of kin/legal consent (i.e. only the wife can give consent for PMSR), 3) the death was sudden (permitting retrieval less than 24 hours post mortem) and 4) consent to a 1-year waiting period for bereavement and assessment of recipient. RESULTS: Of the 22 families who sought PMSR 18 were not candidates for retrieval based on the criteria established by the guidelines. Four men 29 to 36 years old underwent PMSR after death and maintained on a respiratory (2) or within the first 24 hours after death (2). Procedures performed included vasal aspiration in 3 patients and epididymal/testicular retrieval in 1. Average specimen volume (including medium) was 2.1 cc, the average number of vials cryopreserved per patient was 3, sperm count was 17.6 million per ml and motility was 8.7%. All specimens demonstrated post-thaw motility. Only 1 wife used retrieved sperm for an in vitro fertilization cycle, and no pregnancy was obtained. CONCLUSIONS: The exclusionary guidelines presented provide a framework utilized at 1 institution for consideration of requests for PMSR and dramatically decreased the number of postmortem sperm retrievals performed.