Objective: The aim of this study was to assess patient experiences when reporting symptoms of twin-twin transfusion syndrome (TTTS) to their health-care providers.
Methodology: The study utilized an online, retrospective survey of women, over the age of 18, who were living in the United States at the time of their pregnancy and had completed a TTTS pregnancy.
Results: Three hundred sixty-seven cases were included for analysis. Nearly half of the respondents (45.2%) reported experiencing maternal symptoms prior to TTTS diagnosis. The average number of symptoms experienced was 2.85. The average gestational week of symptom onset was 18.2. A total of 76.2% of respondents experiencing symptoms shared these concerns with their health-care provider; however, slightly more than half (51.2%) believed that the provider dismissed their complaints.
Conclusions: Results suggest a disconnect between patients' reporting TTTS symptoms and health-care providers responding attentively, as perceived by the patient. It would be advantageous for health-care providers to inform women pregnant with a monochorionic-diamniotic pregnancy to immediately report the presence of any symptom described in the present research, which may be associated with any number of twin pregnancy-related complications.
Keywords: MCDA; TTTS; maternal symptomatology; monochorionic–diamniotic; patient experience; reporting; twin–twin transfusion syndrome.