消失双子症候群の理解：患者の体験

タイトル: The Experiences of Patients with Vanishing Twin Syndrome: A Mixed-Methods Exploration of Patient Satisfaction and Miscarriage Information

概要: BackgroundVanishing 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. ObjectivesTo 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 DesignA 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. ResultsParticipants 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. ConclusionThe 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 statementStudy 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?O_LITo explore the experiences of individuals diagnosed with Vanishing Twin Syndrome and analyse common themes C_LIO_LITo assess communication between healthcare providers and Vanishing Twin Syndrome patients regarding potential risks, symptoms, and diagnosis. C_LI B. What are the key findings?O_LINegative sentiments of provider communication of Vanishing Twin Syndrome risks and symptoms were commonly reported. C_LIO_LILow average rating of information received during Vanishing Twin Syndrome diagnosis. C_LIO_LIPatient information provision varied significantly between countries. C_LI C. What does this study add to what is already known?O_LIChallenges in patient-provider communication and support for individuals diagnosed with Vanishing Twin Syndrome are common. C_LIO_LIImproved support during Vanishing Twin Syndrome diagnosis and pregnancy may improve patient satisfaction C_LIO_LIIdentifies gaps in existing guidelines and protocols for the management of Vanishing Twin Syndrome pregnancies. C_LI