Search

Pediatric diagnoses of sex chromosome multisomies (SCMs) have increased as genetic testing has expanded. However, depending on SCM presentation, there may be significant delays between symptom recognition and diagnosis. We conducted a survey of parents of children diagnosed with SCMs to understand their experiences receiving an SCM diagnosis and their support needs.We conducted an inductive qualitative analysis of open-ended survey responses for iterative themes related to presenting symptoms, diagnostic odyssey, immediate and long-term support needs, and awareness of SCMs.Of the 323 parents who completed the survey, 185 parents received a pediatric diagnosis (0-21 years) in a child. Many parents expressed feelings of relief when receiving the diagnosis, especially if it occurred after a lengthy diagnostic odyssey. Parents reported frustration that their child's nonmedical symptoms, including learning disabilities, speech delays, attention deficits, and behavioral issues, were not flagged as potential indications for SCMs and suggested that greater awareness of SCMs by pediatricians, educators, and other professionals involved in their child's care may lead to earlier diagnosis and intervention.This is the largest qualitative study to date examining parent and caregiver experiences with a pediatric diagnosis of SCMs. Increased knowledge and awareness of nonmedical SCM symptoms are needed among medical, education, occupational, and psychology professionals for early testing referral and improved support of children with SCMs.

The practice of maternal-fetal surgery (MFS) has expanded from lethal fetal conditions to conditions which are significantly disabling but not a lethal fetal abnormality. The inclusion of myelomeningocele within the scope of MFS in the 1990s sparked a renewed debate over the ethics of MFS. While demonstrating increasing efficacy and range of application, MFS continues to be ethically fraught due to the inherent tension between maternal and fetal interests. Ethical issues central to MFS include the patienthood of the fetus; the balance of risks and benefits between the woman and fetus; informed consent for experimental procedures; and determination of conditions that meet ethical qualifications for MFS intervention. These concerns are likely to persist and evolve as perinatal medicine continues to advance. Here we summarize the current state of MFS ethics, highlighting the major positions in the literature thus far as well as examine future directions. It is essential robust discussions of these important issues continue both to ensure ethical medical practice and to provide support to clinicians, pregnant women, and their families.

Objective: To assess the impact of the coronavirus disease 2019 (COVID-19) pandemic on obstetricians/gynecologists (OB/GYNs). Participants and Methods: A 49-item survey was distributed to OB/GYNs through the websites and electronic mailing lists of professional OB/GYN organizations. The survey was open from June 22, 2020, through November 22, 2020. Of the 122 initiated surveys, 89 were completed (73.0% completion rate); 72 respondents answered at least one open-ended question and were included for qualitative analysis. Results: Respondents reported policy changes, limited personal protective equipment availability, patient compliance with safety protocols and personal protective equipment use, staff shortages, and concerns about COVID-19 exposure as primary stressors related to the pandemic. Respondents felt that the pandemic had a negative professional impact on their relationships with patients and colleagues. Workplace and pandemic stressors resulted in feelings of anxiety and frustration; physical effects were also reported. Some respondents indicated that they were considering early retirement or leaving the profession as a result of the pandemic, which suggests that OB/GYNs may be at increased risk for burnout. Conclusion: The COVID-19 pandemic will have important long-term effects on OB/GYN well-being and workforce retention. Proactive support for OB/GYNs is needed to combat burnout and counteract workforce attrition. Implementing peer support programs that promote healthy emotional processing following adverse events may mitigate these feelings and reduce OB/GYN burnout.

Objective The aim of the study was to determine the prevalence of second victim experience (SVE) among obstetrics and gynecology (OBGYN) clinical and nonclinical healthcare workers and compare healthcare workers who did and did not identify as a second victim (SV) in the last year. Methods The validated Second Victim Experience and Support Tool and additional questions designed to explore SVE topics specific to OBGYN healthcare workers were administered to a multidisciplinary group. Results Of 571 individuals sent a survey link, 205 completed the survey: 117 worked in obstetrics (OB), 73 in gynecology (GYN), and 15 in both areas. Overall, 44.8% of respondents identified as an SV sometime during their career, 18.8% within the last 12 months. Among nonclinical staff respondents, 26.7% identified as an SV during their career and 13.3% in the last 12 months. Respondents who identified as an SV in the last 12 months reported experiencing significantly more psychological and physical distress, a greater degree to which colleague and institutional support were perceived as inadequate, decreased professional self-efficacy, and increased turnover intentions. The most common events identified as likely triggers for SVE were fetal or neonatal loss (72.7%) and maternal death (68.2%) in OB and patient accusations or complaints (69.3%) in GYN. Conclusions Among survey respondents, there was a high prevalence of SVs in OBGYN staff, distributed equally between OB and GYN. Nonclinical healthcare workers also identified as SVs. The OBGYN departments should consider using the Second Victim Experience and Support Tool to screen for potential SV among their healthcare workers to provide additional support after events.

Sex chromosome aneuploidies (SCAs) occur in 1 in every 400 births. SCAs are highly variable and have uncertain prognoses, complicating the delivery of prenatal cell-free DNA (cfDNA) results or diagnosis following amniocentesis or chorionic villus sampling. Using a mixed-methods approach, we explored the experiences of parents receiving a prenatal diagnosis of a fetus with SCA. Responses to open-ended questions were qualitatively analyzed. Of the 323 parents who completed the survey, 122 received a prenatal diagnosis and answered at least one open-ended question. Most parents did not recall being informed that cfDNA screening or amniocentesis could reveal the presence of a SCA prior to testing and described feeling unprepared for a positive result. Variation was found between parents who were delivered a diagnosis by a genetic professional versus other clinical specialties. Many parents expressed that the diagnosis was delivered in a way that emphasized the negative attributes of the SCA and that they were provided limited support materials. Parents who received a prenatal diagnosis of a SCA expressed a desire for more supportive delivery of prenatal diagnosis that focuses on parental education and nuanced discussion of potential phenotypes. Genetic counselors should be aware of the range of parental experiences when receiving a SCA diagnosis from non-genetic providers. Prenatal SCA diagnoses are predicted to increase as prenatal cfDNA screening becomes more widely used. Collaborations for greater provider education and comprehensive materials on SCAs are essential to facilitate the delivery of SCA diagnoses and improve parent understanding and support.

Individuals with Down syndrome (DS) experience increased risk of Alzheimer’s disease (AD). Recent studies suggest that a vaccine against AD may be forthcoming. Parental buy-in is critical to the success of any intervention in this population, as adults with DS often rely on familial support. This study aims to characterize parents’ perceptions of a hypothetical vaccine to prevent AD in individuals with DS. A mixed-methods, anonymous survey was distributed via social media. Participants were asked about their experiences with DS and reactions to proposed interventions. Open-ended responses were thematically analyzed using NVivo 12. Of 1,093 surveys initiated, 532 were completed. Of the parents sampled (N = 532), a small majority (54.3%), supported the proposed AD vaccine. All expressed the need for extensive pre-enrollment education and minimal risk. For many, limited research and long-term sequelae were concerns.

Sex chromosome multisomies (SCMs) are genomic conditions with variable phenotypes that range from undetectable to requiring extensive clinical intervention. Currently, many individuals with SCMs are diagnosed in adolescence or adulthood based on physical symptoms related to pubertal development and infertility. Given the expansion of genetic testing in routine clinical practice, the diagnosing clinician is increasingly a primary care or family medicine provider. This study aims to help providers better understand the patient experience of receiving a diagnosis. We conducted a survey of individuals (n = 55) with SCMs using closed and open-ended questions. Open-response questions were qualitatively analyzed and are reported here with the descriptive results of the closed-ended questions. Most participants were diagnosed with 47,XXY (n = 51; 85.0%), identified as White race/ethnicity (n = 46; 88.5%), and were college graduates or higher (n = 29; 54.7%). Many participants reported dissatisfaction with the delivery of the diagnosis, expressing that it was rushed and their provider lacked detailed information about the condition. Participants were frustrated by the general lack of availability of high-quality informational resources from both medical and other sources at the time of diagnosis. Some participants also described the social and psychological impact of the diagnosis and how it was delivered. To the best of our knowledge, this is the largest survey of individuals diagnosed with SCMs, which is notable considering their prevalence and low diagnostic rate. Our findings provide patient-informed insight on how to improve the delivery of SCM diagnoses, especially delivery in a primary care setting, including the provision of up-to-date information and proactive referral to specialty care and counseling services. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s12687-022-00604-0.

Aim (s) To investigate second victim experiences and supportive resources for nurses in obstetrics and gynaecology. Background Nurses are at risk of developing second victim experiences after exposure to work related events. Methods Nurses at a single institution were invited to participate in an anonymous survey that included the validated Second Victim Experience and Support Tool to assess symptoms related to second victim experiences and current and desired supportive resources. Results Of 310 nurses, 115 (37.1%) completed the survey; 74.8% had not heard of the term 'second victim'. Overall, 47.8% reported feeling like a second victim during their career and 19.1% over the previous 12 months. As a result of a second victim experience, 18.4% experienced psychological distress, 14.3% turnover intentions, 13.0% decreased professional self-efficacy, and 12.2% felt that institutional support was poor. Both clinical and non-clinical events were reported as possible triggers for second victim experiences. Peer support was the most desired form of support as reported by 95.5%. Conclusion(s) Nurses in obstetrics and gynaecology face clinical and non-clinical situations that lead to potential second victim experiences. Implications for nursing management The second victim experiences of nurses should be acknowledged, and resources should be implemented to navigate it. Educational opportunities and peer supportive interventions specific to second victim experiences should be encouraged.

The U.S. is one of the few countries in the world in which maternal and infant morbidity and mortality continues to increase, with the greatest disparities observed among non-Hispanic Black women and their infants. Traditional explanations for disparate outcomes, such as personal health behaviors, socioeconomic status, health literacy, and access to healthcare do not sufficiently explain why non-Hispanic Black women continue to die at three to four times the rate of White women during pregnancy, childbirth, or postpartum. One theory gaining prominence to explain the magnitude of this disparity is allostatic load, or the cumulative physiological effects of stress over the life-course. People of color disproportionally experience social, structural, and environmental stressors that are frequently the product of historic and present-day racism. In this essay we present the growing body of evidence implicating the role of elevated allostatic load in adverse pregnancy outcomes among women of color. We argue that there is a moral imperative to assign additional resources to reduce the effects of elevated allostatic load before, during, and after pregnancy to improve the health of women and their children.

Objective To determine relevant provider opinions on uterus transplantation (UTx). Patients and Methods We invited 1933 providers in obstetrics and gynecology, transplant surgery, transplant medicine, internal medicine, and family medicine at a large, integrated health care system to complete an online survey containing a series of questions on their attitudes about the ethics and clinical utility of UTx. The survey was open from June 4, 2018, through July 2, 2018. We received 449 responses overall (23.2% response rate). Results Of 433 physicians who responded, 195 (45.0%) believe that UTx is ethically justified, and just over a third (160 of 446 [35.9%]) would introduce the possibility of UTx to a patient with absolute uterine factor infertility (AUFI). Respondents indicated the risks to donor, recipient, and child carried the most weight in their ethical evaluation and were most supportive of UTx in a patient with congenital uterine absence (334 of 743 [45.0%]; participants were allowed to choose more than one answer). A majority stated that a living or cadaveric donor would be an acceptable donor source (238 of 395 [60.3%]). Conclusion Provider support for UTx is qualified by safety concerns and its expansion to patient populations other than women with AUFI. This survey suggests that most providers limit their support of UTx to patients with the most demonstrated clinical need, childless women with AUFI.

Researchers are investigating new technologies to mitigate or prevent symptoms of Down syndrome (DS), including chromosome silencing and pharmacotherapy. We surveyed parents of individuals with DS to assess their opinions on two hypothetical scenarios describing prenatal chromosome silencing and pediatric pharmacological intervention to improve neurocognition in children with DS. Although a slim majority of participants supported the availability of both therapies, respondent support was contingent on the risks presented, including the risk of miscarriage in the prenatal intervention and the impact of pharmaceuticals on their children's personality. Many parents expressed ambivalence, articulating a desire to improve their children's quality of life but requiring more safety and efficacy research before agreeing to a genetic or pharmacological intervention.

Increased prenatal diagnoses of sex chromosome aneuploidies (SCAs) amid limited knowledge of their prognoses heighten the need to understand how families contend with the implications of an SCA. To explore the experiences of parents and individuals who received a genetic diagnosis of an SCA (excluding Turner syndrome), we conducted semistructured qualitative telephone interviews with 43 participants affected by these conditions. Parents (n = 35) and individuals (n = 8) expressed almost unanimous interest in more optimistic portrayals of their condition from their providers, even when the prognosis is uncertain. While some participants reported success in receiving accurate information from their provider and identifying supportive resources, numerous families received outdated or misleading information about their condition and lacked direction in accessing follow-up care and support. Parents desire greater coordination of their child’s medical care and access to care that approaches an SCA holistically. Opportunities remain to improve the diagnosis and care of individuals with SCAs.

Pediatric healthcare professionals (HCPs) may experience events that lead to psychological distress or second victim experiences (SVEs). This project evaluates the impact of a newly implemented peer support program on SVEs and perceptions of supportive resources among pediatric HCPs.A second victim (SV) peer support program was implemented in the pediatric inpatient and intensive care units in September 2019. Multidisciplinary HCPs in these units were invited to participate in an anonymous survey that included the Second Victim Experience and Support Tool before and one-year after implementation. The survey assessed HCPs' SVEs, desired support, and perceptions of the peer support program.52.0% (194/373) completed the pre-implementation survey, and 43.9% (177/403) completed the post-implementation survey. At both timepoints, participants reported SV-related psychosocial distress, physical distress, or low professional self-efficacy; the most desired support was 'a respected peer to discuss the details of what happened'. Following implementation of the peer support program, HCPs were significantly more likely to have heard of the term 'second victim' (51.8 vs. 74.0%; p 0.001) and to have felt like there were adequate resources to support SVs (35.8% vs. 89.1%; p 0.001). In the post-implementation survey, most respondents indicated a likelihood to use the program for themselves (65.7%) or colleagues (84.6%) after involvement in future traumatic clinical events.Implementation of a peer support program significantly influenced awareness and perceptions of support available for SV-related distress.Peer support programs should be implemented to help HCPs navigate SVEs and decrease SV-related turnover intentions.

Youth are an understudied population requiring additional safeguards when participating in research. Their input is necessary to facilitate participation and interest in studies. To address this, Mayo Clinic established one of the first pediatric advisory boards (PAB) comprised of 18 diverse youth aged 11–17. The PAB members participated in quarterly meetings (in person and then by video conference with the advent of COVID-19) where they provided feedback to researchers on recruitment strategies, study materials, and procedures. The PAB meetings fostered bidirectional conversations with researchers on several health research topics, including mental health. Youth advisory boards can promote engagement in pediatric research.

Uterine fibroids are non-cancerous neoplasms of the uterus. Women of color, including non-Hispanic Black/African American women and Hispanic/Latinas, have a higher uterine fibroid prevalence, incidence, and disease burden compared to non-Hispanic White women. Therefore, understanding ethnoracial factors in the diagnosis and treatment of uterine fibroids in women of color is critical. This study provides insight on the ethnoracial factors and cultural barriers experienced by women of color in the management and treatment of uterine fibroids.Women were recruited via The Fibroid Foundation, a nonprofit that provides uterine fibroid support and education. Women who were interested completed an online screening survey. Eligible participants were interviewed via phone. Transcribed audio recordings were qualitatively analyzed using the principles of grounded theory.Forty-seven women of reproductive age who were diagnosed with uterine fibroids and received U.S.-based care participated in a semi-structured interview exploring experiences with uterine fibroid diagnosis and management. Twenty-eight women self-identified as Black, Latina, or other ethnicity. Women of color reported fibroid symptoms that significantly disrupted their work and home life. Women of color also reported perceptions that their race/ethnicity impacted their uterine fibroid treatment, including negative interpersonal provider-patient interactions. These perceptions engendered feelings of skepticism towards the medical system based on historical injustices and/or their own negative experiences and led some to go without longitudinal care.Cultural and familial factors have significant impact on uterine fibroid diagnosis and management. Greater attention to culturally sensitive care and potential bias reduction in the treatment of uterine fibroids should be a priority.

Introduction: Community Advisory Boards (CABs) are typically comprised of adult community members who provide feedback on health-related, adult-focused research. Few, if any, CABs comprised of youth participants exist. In 2019, a Midwest medical center recruited a diverse group of 18 11–17-year-old community members to a Pediatric Advisory Board (PAB) to provide feedback on the recruitment and involvement of minors in research. Methods: Semi-structured interviews with n = 12 PAB members were conducted to understand their experiences and views on participating in the PAB. Parents (n = 7) were interviewed separately to assess the congruence of views on PAB membership between parents and their children. Interview transcripts were qualitatively analyzed to identify iterative themes. Results: PAB members thought the PAB addressed an unmet need of soliciting feedback from youth to develop age-appropriate study materials and to understand potential concerns of young participants. While PAB members expressed interest in the research topics presented by researchers, a few members indicated barriers to full participation, including lack of self-confidence, anxiety, and discomfort sharing opinions in a group setting. Parents supported their child’s PAB participation and hoped it would help them build confidence in developing and sharing their opinions in ways that were meaningful for them, which PAB members largely reported occurring over their period of involvement. Conclusion: Findings from a novel Midwest PAB indicated benefits to PAB members. While contributing to pediatric research planning by providing feedback on recruiting youth and improving study protocols, they gained confidence in providing opinions on biomedical research and developed their scientific literacy.

The most common sex chromosome aneuploidies (SCA) (47, XXY; 47, XYY; 47, XXX) frequently result in a milder phenotype than autosomal aneuploidies. Nevertheless, these conditions are highly variable and more symptomatic phenotypes may require significant clinical involvement, including specialty care. While historically most individuals with mild phenotypes remained undiagnosed during their lifetime, the increasing use of genetic testing in clinical care has increased the prenatal and postnatal diagnosis of SCAs. These genetic tests are frequently ordered by non-genetic providers who are also responsible for delivering the diagnosis. We surveyed parents of children (n=308) to evaluate their experience of receiving a diagnosis and their support needs. The majority (73.3%) received the diagnosis from a non-genetic medical provider. Following a prenatal diagnosis parents reported experiencing depression, anxiety, and less optimism than those receiving a postnatal diagnosis. Few parents reported receiving materials explaining their child’s condition that they found to be up-to-date, accurate, and unbiased. The frequently negative reported experiences of parents at time of diagnosis suggests more educational opportunities should be provided for non-genetic providers in order to become more informed about these conditions and communicate the diagnosis in a way parents experience as supportive.

Objective Owing to fragmentation in the medical system, many parents of children with disabilities report taking on a care coordinator and advocate role. The parental advocacy and care coordination requirements are further amplified in this population because of a lack of awareness about sex chromosome aneuploidies (SCAs) in medical and social services settings, as well as the complex needs of affected children. This burden disproportionately affects mothers and low-resource families as a result of gendered ideas of parenthood and social stratification in resource access. The aim of this study is to understand the unique parental burdens of SCAs and family support needs. Methods We conducted 43 interviews with individuals with SCAs and/or their parents and qualitatively coded and analyzed the transcripts for themes relating to parent advocacy, medical services, social and educational services, and coping. Results Our findings indicate that parents must repeatedly advocate for their concerns about their child to be taken seriously before diagnosis and continue to advocate for services and interventions throughout childhood and adolescence. Parents also report the need to educate health care professionals about their child's medical condition. A majority of the parent participants were women, and single mothers reported high levels of emotional burden. Conclusion Parents of children with SCAs shoulder additional roles of medical advocate and care coordinator. This causes excessive burden on families but also disadvantages families in which parents are unable to act as an advocate for their child.

Objectives: This study examined the experiences of women receiving high-risk cell-free DNA (cfDNA) screening results, with particular focus on decisional satisfaction after receiving high-risk, fal...

Ilana Lowy’s recent monograph, Imperfect Pregnancies: A History of Birth Defects & Prenatal Diagnosis, is a timely and informative historical overview tracing the fascination of “monstrous births” ...

Researchers are exploring the use of gene-editing technologies to prevent and/or treat genetic conditions in humans. Stakeholder views, including those of patient and family populations, are important in the ongoing bioethical discussion. We conducted 27 semi-structured interviews with parents of people with trisomy 21 (T21

Gene-editing techniques have progressed rapidly in the past 5 years. There are already ongoing human somatic gene-editing clinical trials for multiple diseases. And there has been one purported scenario of human germline gene editing in late 2018. In this paper, we will review the current state of the technology, discuss the ethical and social issues that surround the various forms of gene editing, as well as review emerging stakeholder data from professionals, the ‘general public’ and individuals and families dealing with genetic diseases potentially treatable by gene editing.

Recent evidence suggests prenatal fetoscopic tracheal occlusion (FETO) may improve the survival and long-term morbidity of neonates with congenital diaphragmatic hernia, yet little guidance exists in the medical literature as to the ethical permissibility of performing a maternal-fetal surgical intervention in a twin pregnancy discordant for a structural abnormality.Here, we present a case of a twin pregnancy with an unaffected twin (Twin A) and a twin diagnosed with severe congenital diaphragmatic hernia (Twin B). A proposed fetoscopic tracheal occlusion (FETO) procedure may improve the likelihood of survival and postnatal outcome of Twin B; however, balloon placement may also initiate very preterm birth at 28 weeks of gestation. The Fetal Ethics Advisory Board was asked to provide guidance on the permissibility of FETO in this pregnancy.A literature review identified one brief mention of FETO in a 34-week dichorionic twin pregnancy in the medical literature, which resulted in the rupture of fetal membranes in the sac of the nonsurgical twin. Only one paper specifically addressed the question of whether it would be ethically permissible to subject a healthy twin to the risks of maternal-fetal surgery for the benefit of a compromised twin, finding that any risk to the unaffected twin would be an ethical contraindication. We offer our own analysis of moral weight and risk/benefit considerations of this proposed intervention, and present our findings on the circumstances in which it may be ethically permissible to perform a maternal-fetal intervention in a twin pregnancy.While FETO was not ethically advisable in this pregnancy, we find that in limited circumstances, certain maternal-fetal surgical interventions may be ethically permissible in a twin pregnancy discordant for a structural abnormality if the risks to the unaffected twin are minimal and the procedure would improve the likelihood of survival and postnatal outcome of a critically compromised co-twin.

The application of gene editing technologies to prevent or mitigate genetic disease in humans is considered one of its most promising applications. However, as the technology advances, it is imperative to understand the views of the broader public on how it should be used. We conducted focus groups to understand public views on the ethical permissibility and governance of gene editing technologies in humans. A total of 50 urban and semirural residents in the upper Midwest took part in six focus groups. Participants expressed multiple concerns about nonmedical uses of gene editing and its potential for unknown harms to human health, and were divided as to whether the individual patient or “medical experts” should be charged with overseeing the scope of its application. As potential stakeholders, the perspectives from the general public are critical to assess as genome editing technologies advance toward the clinic.

IMPACT: In alignment with principles of community engaged research, feedback from participants in this research study may influence infertility clinics to offer psychological support for individuals or couples experiencing high levels of psychosocial burden when pursuing fertility procedures, especially during periods of interrupted care or uncertainty. OBJECTIVES/GOALS: 1) To assess the psychosocial impact on patients whose fertility treatments were interrupted during the COVID-19 shutdown. 2) To assess the correlation of patient perceived risk at the time of treatment cessation compared to the resumption of treatment, both during an ongoing pandemic. METHODS/STUDY POPULATION: Female patients with scheduled fertility treatments at Mayo Clinic within 6 months of 3/15/2020, were contacted through the patient portal and invited to participate in this study. Interested patients were contacted by a study staff member to obtain their consent and HIPAA authorization and to schedule a phone or Zoom interview. Semi-structured interviews were conducted individually, or in partner dyads depending upon participant preference, and were recorded with their permission. Audio recordings were professionally transcribed and de-identified. Transcripts were qualitatively analyzed using NVivo 12 based on the principles of grounded theory. RESULTS/ANTICIPATED RESULTS: 26 participants were interviewed; 20 interviews were conducted individually and 3 were conducted in dyads with their partners. Initial themes from the interviews show that COVID-19 compounded existing psychosocial burden on individuals and couples undergoing fertility treatments. Women who were older in age, had prolonged history of infertility, or multiple unsuccessful treatment cycles reported feeling an increased urgency to proceed with fertility treatments due to the time sensitive care, which outweighed the perceived risks of COVID-19 to either themselves or the potential pregnancy. Patients also reported a desire for improved communication regarding their procedures and overall well-being, as well as options for counseling services for individuals or couples undergoing fertility treatments. DISCUSSION/SIGNIFICANCE OF FINDINGS: Participants indicated the need for increased psychological support for patients pursuing fertility treatments, especially during periods of interrupted care or uncertainty, as highlighted during the COVID 19 pandemic. Offering counseling as a routine part of the treatment process may mitigate this burden.

Uterine fibroids are noncancerous tumors associated with significant morbidity among symptomatic patients. While medical and surgical treatments have expanded, hysterectomy remains common. We interviewed women diagnosed with uterine fibroids ( n = 47) to explore their experiences and recommendations for shared decision-making. A majority were non-Hispanic Black, highly educated (51.1%), and had graduate degrees (40.4%). Participants with both positive and negative provider experiences expressed a desire for a more proactive therapeutic approach, including a presentation by their provider of the spectrum of medical and surgical treatment options, and greater provider recognition of the impact of symptoms on quality of life. Women advocated for expanded shared decision-making that acknowledged their contribution to their own treatment plan and felt early screening and improved patient/provider education of uterine fibroid symptoms would facilitate greater congruence between treatment approaches and patient goals. Perceptions of insufficient input into their treatment plans frequently served as a barrier to care-seeking and treatment acceptance among women with uterine fibroid symptoms. Improved discussion of treatment options in the context of the unique symptom burden and values of the patient may facilitate greater provider trust and acceptance of uterine fibroid treatment.

Compassionate transfer is a procedure wherein in vitro-created embryos are placed in a patient's cervix, vagina or uterus at an infertile period in the menstrual cycle where they are expected to perish. Patients report that they feel this procedure is a more natural means of disposition and provides them with the opportunity to grieve the loss of a potential child. However, some have argued that the procedure is an unnecessary, and illogical, addition to fertility treatment and that it detracts resources from medical care. Here, we introduce compassionate transfer as an alternative disposition option and argue that, for certain patients, it may constitute an ethical extension of fertility care that respects patient autonomy and psychosocial health.