Background Vanishing Twin Syndrome is a phenomenon where one or more foetuses appear to ‘vanish’ during pregnancy, although in two out of three cases of Vanishing Twin Syndrome there is not complete vanishment of a foetus. Moreover, despite recognition of the syndrome since 1945, a lack of comprehensive guidelines and protocols for its management remains, which may create challenges in patient care and support.

Objectives To explore the experiences of individuals diagnosed with Vanishing Twin Syndrome and analyse common themes among diagnoses and patient-provider communication regarding potential risks and symptoms during pregnancy.

Study Design A global, online survey was created with Qualtrics and comprised 11 questions, including quantitative demographic questions, open-ended qualitative questions, and a sliding-scale rating question. Participants eligible for the study were individuals over the age of 18 who were previously diagnosed with Vanishing Twin Syndrome, currently experiencing Vanishing Twin Syndrome, or believed they may have experienced Vanishing Twin Syndrome without a formal diagnosis. Data analysis utilized Qualtrics’ Stats iQ and Crosstabs iQ tools.

Results Participants reported negative sentiments regarding provider communication of Vanishing Twin Syndrome risks and symptoms, with an average sentiment score of -0.7. Over 53% of responses ranked as -1 on the sentiment scale. The average rating of general information received during Vanishing Twin Syndrome diagnosis was 3.5 out of 10. More than 43% of respondents were not informed of the chorionicity during their Vanishing Twin Syndrome pregnancy despite the known potential impacts of chorionicity on the surviving foetus(es). Discrepancies in information provision were observed across multiple countries, with differences resulting from variations in the quality of patient education and support.

Conclusion The study highlights challenges in communication and support for individuals diagnosed with Vanishing Twin Syndrome and emphasizes a need for improved patient education and guidelines for optimal care. Addressing gaps in patient-provider communication and support may lead to better outcomes and experiences for patients diagnosed with Vanishing Twin Syndrome, as well as their families. Further research is warranted to explore long-term implications and develop tailored interventions for the management of Vanishing Twin Syndrome pregnancies that are also beneficial for patients who experience other forms of miscarriage and infant death in both singleton and multiple pregnancies.

Tweetable statement Study reveals challenges in patient-provider communication and support for individuals diagnosed with Vanishing Twin Syndrome, highlighting a need for enhanced protocols and guidelines for optimal care.

A. Why was this study conducted?

To explore the experiences of individuals diagnosed with Vanishing Twin Syndrome and analyse common themes

To assess communication between healthcare providers and Vanishing Twin Syndrome patients regarding potential risks, symptoms, and diagnosis.

B. What are the key findings?

Negative sentiments of provider communication of Vanishing Twin Syndrome risks and symptoms were commonly reported.

Low average rating of information received during Vanishing Twin Syndrome diagnosis.

Patient information provision varied significantly between countries.

C. What does this study add to what is already known?

Challenges in patient-provider communication and support for individuals diagnosed with Vanishing Twin Syndrome are common.

Improved support during Vanishing Twin Syndrome diagnosis and pregnancy may improve patient satisfaction

Identifies gaps in existing guidelines and protocols for the management of Vanishing Twin Syndrome pregnancies.

The authors have declared no competing interest.

The author(s) received no specific funding for this work.

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

Yes

The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

Institutional approval for this study was provided by the Institutional Review Board at the Massachusetts College of Pharmacy and Health Sciences on May 2, 2024 (reference number - IRB-2022-2023-123). The study was deemed exempt as no private health information was asked of participants in the study survey.

I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.

Yes

I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).

Yes

I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable.

Yes

All relevant data are within the manuscript and its Supporting Information files.