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Browsing by Author "Chien, Edward K."
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Item Decision-making for prenatal genetic screening: how will pregnant women navigate a growing number of aneuploidy and carrier screening options?(Springer Nature, 2021-12-04) Farrell, Ruth M.; Pierce, Madelyn; Collart, Christina; Yao, Meng; Coleridge, Marissa; Chien, Edward K.; Rose, Susannah S.; Lintel, Mary; Perni, Uma; Tucker Edmonds, Brownsyne; Obstetrics and Gynecology, School of MedicineBackground: Prenatal genetic screens, including carrier screening (CS) and aneuploidy screening (AS), comprise an important component of reproductive healthcare delivery. Clinical practice guidelines emphasize the importance of informed decision-making and patient's preferences regarding the use of these screens. Yet, it is unclear how to achieve this ideal as prenatal genetic screening options rapidly become more complex and increasingly available to patients. With increased complexity and availability of reproductive testing options, decision-support strategies are critical to prepare patients to consider AS and/or CS. Methods: A self-administered survey evaluated knowledge and decision-making preferences for expanded carrier (CS) and aneuploidy (AS) prenatal screening. The survey was administered to participants before their first prenatal visit to assess baseline decision-making needs and preference at the initiation of prenatal care. Analysis was approached as a descriptive process. Results: Participants had similar familiarity with the concepts associated with AS compared to CS; mean knowledge scores for CS was 0.59 [possible range 0.00 to 1.00] and 0.55 for AS. Participants reported preferences to learn about a range of conditions, including those with severe or mild impact, childhood-onset, and adult-onset. Decision-making preference with respect to learning about the associated disease phenotypes for the contained on AS and CS panel shifted with the complexity of the panel, with a greater preference to learn about conditions post-test compared pre-test education as panels increased from 5 to 100 conditions. Conclusion: Patients' baseline knowledge of prenatal genetic screens coupled with evolving decision-making preferences presents challenges for the delivery of prenatal genetic screens. This calls for the development and implementation of innovative approaches to support pregnant patients' decision-making commensurate with advances in prenatal genomics.Item The Impact of the Emergence of COVID-19 on Women’s Prenatal Genetic Testing Decisions(Wiley, 2021) Farrell, Ruth M.; Pierce, Madelyn; Collart, Christina; Craighead, Caitlin; Coleridge, Marissa; Chien, Edward K.; Pemi, Uma; Frankel, Richard; Ranzini, Angela; Tucker Edmonds, Brownsyne; Obstetrics and Gynecology, School of MedicineObjective We conducted a study to examine the impact of COVID on patients' access and utilization of prenatal genetic screens and diagnostic tests at the onset of the COVID‐19 pandemic in the United States. Methods We conducted telephone interviews with 40 patients to examine how the pandemic affected prenatal genetic screening and diagnostic testing decisions during the initial months of the pandemic in the United States. An interview guide queried experiences with the ability to access information about prenatal genetic testing options and to utilize the tests when desired. Audio recordings were transcribed and coded using NVivo 12. Analysis was conducted using Grounded Theory. Results The pandemic did not alter most participants' decisions to undergo prenatal genetic testing. Yet, it did impact how participants viewed the risks and benefits of testing and timing of testing. There was heightened anxiety among those who underwent testing, stemming from the risk of viral exposure and the fear of being alone if pregnancy loss or fetal abnormality was identified at the time of an ultrasound‐based procedure. Conclusion The pandemic may impact patients' access and utilization of prenatal genetic tests. More research is needed to determine how best to meet pregnant patients' decision‐making needs during this time.Item Reducing decisional conflict in decisions about prenatal genetic testing: the impact of a dyadic intervention at the start of prenatal care(De Gruyter, 2024-04-29) Collart, Christina; Craighead, Caitlin; Yao, Meng; Rose, Susannah; Chien, Edward K.; Frankel, Richard M.; Coleridge, Marissa; Hu, Bo; Tucker Edmonds, Brownsyne; Ranzini, Angela C.; Farrell, Ruth M.; Obstetrics and Gynecology, School of MedicineObjectives: Decisional conflict and regret about prenatal genetic screening and diagnostic tests may have important consequences in the current pregnancy and for future reproductive decisions. Identifying mechanisms that reduce conflict associated with the decision to use or decline these options is necessary for optimal patient counseling. Methods: We conducted a cluster-randomized controlled trial of a shared decision-making tool (NEST) at the beginning of prenatal care. Enrolled patients completed follow-up surveys at the time of testing (QTT) and in the second-third trimester (QFF), including the Decision Conflict Scale (DCS). Total DCS scores were analyzed using a multivariate linear mixed-effect model. Results: Of the total number of participants (n=502) enrolled, 449 completed the QTT and QFF surveys. The mean age of participants was 31.6±3.8, with most parous at the time of study participation (n=321; 71.7 %). Both the NEST (the intervention) and control groups had lower median total DCS scores at QFF (NEST 13.3 [1.7, 25.0] vs. control 16.7 [1.7, 25.0]; p=0.24) compared to QTT (NEST 20.8 [5.0, 25.0] vs. control 18.3 [3.3, 26.7]; p=0.89). Participants exposed to NEST had lower decisional conflict at QFF compared to control (β -3.889; [CI -7.341, -0.437]; p=0.027). Conclusions: Using a shared decision-making tool at the start of prenatal care decreased decisional conflict regarding prenatal genetic testing. Such interventions have the potential to provide an important form of decision-making support for patients facing the unique type of complex and preference-based choices about the use of prenatal genetic tests.Item The Impact of Outpatient Prenatal Care Visitor Restrictions on Pregnant Patients and Partners During the COVID-19 Pandemic(Mary Ann Liebert, 2022-08-04) Collart, Christina; Craighead, Caitlin; Rose, Susannah; Frankel, Richard; Tucker Edmonds, Brownsyne; Perni, Uma; Chien, Edward K.; Coleridge, Marissa; Ranzini, Angela; Farrell, Ruth M.; Obstetrics and Gynecology, School of MedicineIntroduction: During the early months of the COVID-19 pandemic, several health care facilities enacted visitor restrictions to help reduce the spread of SARS-CoV-2 among patients, front-line workers in health care systems, and communities. The impact and burden of policy updates on visitor restrictions put forth by the COVID-19 pandemic can be seen on patients and families, most often in the acute care setting and skilled nursing facilities. Yet, the effects of visitor restrictions in the prenatal care setting were unknown. We conducted a study to investigate the impact of these policies on pregnant patients who received outpatient prenatal care. Methods: We conducted a qualitative study to explore pregnant patients' experiences with prenatal health care delivery between May and July 2020. In-depth interviews were conducted with pregnant patients in the first and second trimester of pregnancy, who received their prenatal care at the onset of the pandemic in the United States. Results: Participants noted increased maternal concern, anxiety, and mental health concerns stemming from the lack of in-person partner support. They noted disappointment and lost experiences for the patient during pregnancy, seeking support from her partner during pregnancy, experiences felt to be critical for postpartum health and wellbeing. There was also concern about the negative impact of restrictions on prenatal care quality and experience. Conclusions: This study demonstrates the impact of visitor restrictions on patients' prenatal care experience and perception of health care quality during the COVID-19 pandemic. Future public health strategies should be individualized to different patient populations addressing knowledge, health literacy, and socioeconomic status, and developed in conjunction with pregnant patients as key stakeholders in the delivery of prenatal health care.