BackgroundTwin-to-twin transfusion syndrome (TTTS) affects 10–20 % of monochorionic diamniotic (MCDA) births and accounts for 50 % of fetal loss in MCDA pregnancies. This exploratory qualitative study identified shared experiences, including potential emotional and psychosocial impacts, of this serious disease.MethodsForty-five publicly accessible, online stories posted by families who experienced TTTS were analyzed using grounded theory.ResultsShared TTTS experiences included a common trajectory: early pregnancy experiences, diagnostic experiences, making decisions, interventions and variable outcomes. Families vacillated between emotional highs such as joy, excitement and relief, and lows including depression, anxiety, anger and grief.ConclusionsTTTS disease experience can be considered an “emotional roller coaster” exacerbated by TTTS’s unpredictable and quickly changing nature with the potential for emotional and psychosocial effects. Increased TTTS awareness and research about its corresponding impacts can ensure appropriate patient and family support at all phases of the TTTS experience.
In the United States, routine middle cerebral artery peak systolic velocity (MCA-PSV) Doppler screening for the detection of antenatal twin anemia-polycythemia sequence (TAPS) is not recommended. The current and only national clinical guideline from the highly-influential Society for Maternal-Fetal Medicine states that, “There is no evidence that monitoring for TAPS with MCA PSV Doppler at any time, including > 26 weeks, improves outcomes, so that this additional screening cannot be recommended at this time.” We argue this recommendation has disproportionate influence on patients and the care they are offered and receive. We use current evidence to highlight and dispel pervasive myths surrounding antenatal TAPS and the value of routine MCA-PSV screening. An ethical framework that illustrates the importance of giving patients the opportunity for routine screening is presented. Findings demonstrate that: (1) both spontaneous and post-laser TAPS is a serious, potentially life-threatening complication, (2) treatment for TAPS is effective and includes expectant management, intrauterine transfusion (IUT), or surgery, (3) and routine MCA-PSV, which has satisfactory diagnostic accuracy, is currently the only way to provide early detection of TAPS. We conclude that routine TAPS screening is a medically proven valuable resource that should be offered to patients in need and to the clinicians who are trying to act toward their benefit.
Background The purpose of this initial investigation was to begin to understand the routine twin anemia-polycythemia sequence (TAPS) monitoring practices of maternal-fetal medicine specialists (MFM specialists) in the United States in the absence of a formal guideline. Methods This study used an anonymous, online survey of 90 MFM specialists who were practicing in the United States. A $5 gift card to an online store was used to incentivize participants. Descriptive statistics were calculated. Results All MFM specialists reported at least some familiarity (100.00%) with TAPS. Most participants (92.94%) were familiar with methods for monitoring patients for TAPS and nearly all (97.50%) responded that they use ‘Doppler MCA-PSV’ to make a prenatal TAPS diagnosis. Nearly two-thirds of MFM specialists surveyed (65.06%) reported performing regular TAPS monitoring for patients with monochorionic-diamniotic (MCDA) pregnancies. Conclusion Despite no formal guidelines, the majority of American MFM specialists surveyed are using routine TAPS screening in their management of MCDA twin pregnancies, suggesting that the MFM specialists included in this study consider it a valuable diagnostic tool. Future research should further explore this possible trend toward routine TAPS monitoring amongst MFM specialists in the United States, as well as the potential value of routine TAPS monitoring in MCDA pregnancy.
Symptoms of emotional distress during and after pregnancy may be introduced or exacerbated by unexpected medical conditions in the mother or fetus. Twin-twin transfusion syndrome (TTTS), which accounts for 17% of fetal deaths in twins and entails substantial medical uncertainty, may represent a particularly challenging pregnancy experience. Yet, little is known about the impact of TTTS on women's emotional health. We retrospectively surveyed 350 women who experienced a TTTS pregnancy about their experiences at three time points (prior to, during, and after pregnancy) to examine symptoms of anxiety and depression, mental health diagnoses, thoughts of seeking mental healthcare, help received, and preferred mental health services. Women in this study experienced significantly elevated symptoms of depression and anxiety during and after pregnancy, regardless of their pregnancy outcome (double survivor, single survivor, or double loss). Women reported feeling devastated by their experience and indicated they would have accepted mental healthcare had it been offered and had barriers to care been addressed. Prospective studies of women experiencing TTTS pregnancies are needed to examine TTTS effects on maternal mental health and to determine how to best address emotional care needs.
We conducted a search for international clinical guidelines related to prenatal screening during monochorionic pregnancies. We found 25 resources from 13 countries/regions and extracted information related to general screening as well as screening related to specific monochorionic complications, including twin-twin transfusion syndrome (TTTS), selective fetal growth restriction (SFGR), and twin anemia-polycythemia sequence (TAPS). Findings reveal universal recommendation for the early establishment of chorionicity. Near-universal recommendation was found for bi-weekly ultrasounds beginning around gestational week 16; routine TTTS and SFGR surveillance comprised of regularly assessing fetal growth, amniotic fluids, and bladder visibility; and fetal anatomical scanning between gestational weeks 18–22. Conflicting recommendation was found for nuchal translucency screening; second-trimester scanning for cervical length; routine TAPS screening; and routine umbilical artery, umbilical vein, and ductus venosus assessment. We conclude that across international agencies and organizations, clinical guidelines related to monochorionic prenatal screening vary considerably. This discord raises concerns related to equitable access to evidence-based monochorionic prenatal care; the ability to create reliable international datasets to help improve the quality of monochorionic research; and the promotion of patient safety and best monochorionic outcomes. Patients globally may benefit from the coming together of international bodies to develop inclusive universal monochorionic prenatal screening standards.
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