The Experiences of Patients With Vanishing Twin Syndrome: A Mixed-Methods Exploration of Patient Satisfaction and Miscarriage Information.

Abstract

Vanishing twin syndrome is a miscarriage of multiples where one or more fetuses 'vanishes' (i.e., partial or full resorption or via calcification) during pregnancy, often before detection via ultrasound. It affects 30-50% of multifetal pregnancies, with most cases resulting in full resorption within the first trimester. Despite its recognition since 1945 and rising occurrence in both natural and assisted pregnancies, standardized clinical guidelines remain inadequate, leading to inconsistent diagnosis, counseling, and communication from healthcare providers. This study examines the experiences of mothers and gestational carriers diagnosed with VTS, focusing on patient-provider communication, risks, and symptom disclosure. A global online survey collected qualitative and quantitative data from 153 participants across 17 countries. Results show that most patients with formal diagnoses experienced negative interactions with healthcare providers, with an average sentiment score of -0.7 (on a scale from -2 to 2). Over 53.4% rated their communication experience as -1, and the average satisfaction score for the amount of information received was 3.5/10. Additionally, 43% of respondents were not informed about chorionicity, a key factor affecting fetal outcomes. Significant discrepancies in care were observed across different countries. The findings highlight major gaps in patient-provider communication and inconsistent clinical practices regarding VTS. Addressing these issues through improved education, clearer protocols, and standardized guidelines could enhance patient experiences and decision-making. Future research should focus on provider training and evidence-based strategies to improve the management of VTS and other types of miscarriage and death of multiples during pregnancy and postpartum.