Understanding Sociodemographic Disparities in Maternal-Fetal Surgery Study Participation

Abstract

<b><i>Background/Purpose:</i></b> Although maternal-fetal surgery to treat fetal anomalies such as spina bifida continues to grow more common, potential health disparities in the field remain relatively unexamined. To address this gap, we identified maternal-fetal surgery studies with the highest level of evidence and analyzed the reporting of participant sociodemographic characteristics and representation of racial and ethnic groups. <b><i>Methods:</i></b> We conducted a systematic review of the scientific literature using biomedical databases. We selected randomized control trials (RCTs) and cohort studies with comparison groups published in English from 1990 to May 5, 2020. We included studies from across the globe that examined the efficacy of fetal surgery for twin-twin transfusion syndrome (TTTS), obstructive uropathy, congenital diaphragmatic hernia (CDH), myelomeningocele (MMC), thoracic lesions, cardiac malformations, or sacrococcygeal teratoma. We determined the frequency of reporting of age, gravidity/parity, race, ethnicity, education level, language spoken, insurance, income level, and relationship status. We identified whether sociodemographic factors were used as inclusion or exclusion criteria. We calculated the racial and ethnic group representation for studies in the USA using the participation-to-prevalence ratio (PPR). <b><i>Results:</i></b> We included 112 studies (10 RCTs, 102 cohort) published from 1990–1999 (8%), 2000–2009 (30%), and 2010–2020 (62%). Most studies were conducted in the USA (47%) or Europe (38%). The median sample size was 58. TTTS was the most common disease group (37% of studies), followed by MMC (23%), and CDH (21%). The most frequently reported sociodemographic variables were maternal age (33%) and gravidity/parity (20%). Race and/or ethnicity was only reported in 12% of studies. Less than 10% of studies reported any other sociodemographic variables. Sociodemographic variables were used as exclusion criteria in 13% of studies. Among studies conducted in the USA, White persons were consistently overrepresented relative to their prevalence in the US disease populations (PPR 1.32–2.11), while Black or African-American, Hispanic or Latino, Asian, American-Indian or Alaska-Native, and Native-Hawaiian or other Pacific Islander persons were consistently underrepresented (PPR 0–0.60). <b><i>Conclusions:</i></b> Sociodemographic reporting quality in maternal-fetal surgery studies is poor and inhibits examination of potential health disparities. Participants enrolled in studies in the USA do not adequately represent the racial and ethnic diversity of the population across disease groups.

Postnatal Myelomeningocele Repair in the United States: Rates and Disparities Before and After the Management of Myelomeningocele Study Trial

“…Fetal MMCr is a high-risk, resource-intensive procedure that may be inaccessible to many low-income families-an unattainable benefit to those who will likely be most severely affected by the disease and its downstream effects on quality of life. 21,22,34 Access to fetal repair is a critical frontier in need of health care disparity reduction. Although various insurance plans may provide coverage of fetal MMCr, this may not include associated costs such as travel to the fetal care center, accommodations, time taken off of work, care costs for other children or family members, and other indirect costs.…”

“We All Want to Be Able to Tell You Something Hopeful”: Clinicians’ Experiences Providing Maternal-Fetal Surgery Counseling

“…Addressing this and other complex issues in maternal-fetal surgery counseling will require an ongoing interprofessional approach informed by scientific evidence, adoption of patient-centered practices, and feedback from a diverse group of pregnant people with lived experience. Although it is outside the scope of this exploratory study to define best practices in maternal-fetal surgery counseling, we suggest referencing these relevant evidence-based and patient-centered communication resources and note that these address some of the concerns identified by our clinician participants [32, 33].…”

Parent Decision-Making With Fetal Surgery for Myelomeningocele

“…Limitations include the fact that our sample population was racially homogeneous and well educated compared with the population at large. Perhaps parents with a broader variety of racial and educational backgrounds would have a different experience than that of the parents who shared their time and experience for this study, a concern that is raised in studies at other fetal care centers (Harbert et al, 2022; Wilpers et al, 2022). Another limitation is the fact that parents were recruited from a single-site center.…”