Patient Survey Regarding Non-Medical Burdens of Care at a Parental Fetal Care Center

J Patient Exp. 2024 Feb 11:11:23743735241231693. doi: 10.1177/23743735241231693. eCollection 2024.

Abstract

Recognizing the paucity of literature describing the non-medical effects of care at a tertiary parental fetal care center upon families, the purpose of the study was to better examine the potential barriers that our patients face related to care in a parental fetal care center. An anonymous survey was sent via email to patients who received care from 2015 to 2021. The survey included questions regarding demographics, fetal diagnoses, non-medical expenses related to care, and the impact of care on patient relationships, employment, and other children. 453 patients (15.9%) responded out of the 2684 emails sent. 58.3% of patients traveled >100 miles to reach our referral center, with 20% traveling >300 miles. 42.6% of patients reported non-medical expenditures exceeding $1000, with nearly 1 in 10 reporting expenditures of >$5000 (8.6%). Overall, 38.2% of women reported moderate to severe financial burdens related to receiving care at the parental fetal care center. This study illuminates the financial and social burdens that care at a tertiary parental fetal care center imposes upon families. By acknowledging these barriers, we can strive to minimize them to best provide equitable access to high-quality fetal care services.

Keywords: barriers to care; fetal center; financial burdens; non-medical expenditures; regionalization of fetal care.