Pregnancy and parenting experiences of women with twin-to-twin transfusion syndrome: a qualitative study.
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ABSTRACT: Background
Qualitative research can reflect the actual thoughts and experience of research subjects and can be used to explore the experiences of women presenting with twin-to-twin transfusion syndrome (TTTS) to facilitate the provision of targeted psychological support.Methods
A semi-structured interview method was used to assess the pregnancy and parenting experiences of women with TTTS. Colaizzi method was used for data analysis.Results
Eighteen women participated in the study. We found that women with TTTS during pregnancy experienced persistent worry about their children's health from the disease diagnosis to the subsequent parenting processes, even in case of minor changes in their children's health. The lack of an efficient referral process and health information increased their uncertainty about their children's health.Conclusion
In addition to the children's health, other difficulties encountered during pregnancy and parenting may aggravate the pressure. Clinicians in the first-visit hospital and foetal medicine centre should improve the referral process and establish a follow-up system to provide women with health information and psychological support.
SUBMITTER: Ren L
PROVIDER: S-EPMC8417964 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Twin to twin transfusion syndrome (TTTS) is a common complication that typically presents in the second trimester of pregnancy in 10-15% of monochorionic twins due to net transfer of volume and hormonal substances from one twin to the other across vascular anastomoses on the placenta. Without recognition and treatment, TTTS is the greatest contributor to fetal loss prior to viability in 90-100% of advanced cases. Ultrasound diagnosis of monochorionicity is most reliable in the first trimester and sets the monitoring strategy for this type of twins. The diagnosis of TTTS is made by ultrasound with the findings of polyhydramnios due to volume overload and polyuria in one twin and oligohydramnios due to oliguria of the co-twin. Assessment of bladder filling as well as arterial and venous Doppler patterns are required for staging disease severity. Assessment of fetal cardiac function also provides additional insight into the fetal cardiovascular impacts of the disease as well as help identify fetuses that may require postnatal follow up. Fetoscopic laser ablation of the communicating vascular anastomoses between the twins is the standard treatment for TTTS. It aims to cure the condition by interrupting the link between their circulations and making them independent of one another. Contemporary outcome data after laser surgery suggests survival for both fetuses can be anticipated in up to 65% of cases and survival of a single fetus in up to 88% of cases. However, preterm birth remains a significant contributor to postnatal morbidity and mortality. Long term outcomes of TTTS survivors indicate that up to 11% of children may show signs of neurologic impairment. Strategies to minimize preterm birth after treatment and standardized reporting by laser centers are important considerations to improve overall outcomes and understand the long-term impacts of TTTS.
| S-EPMC8193008 | biostudies-literature
Project description:BackgroundTwin-to-twin transfusion syndrome (TTTS) is a serious complication of 10-15% of twin or triplet pregnancies in which multiple fetuses share a single placenta. Communicating placental vessels allow one fetus (the donor) to pump blood to the other (the recipient). Mortality rates without intervention are high, approaching 100% in some series, with fetal deaths usually due to cardiac failure. Surgical correction using laser photocoagulation of communicating placental vessels was developed in the 1980s and refined in the 1990s. Since it was introduced in Victoria in 2006, laser surgery has been performed in approximately 120 pregnancies. Survival of one or more fetuses following laser surgery is currently >?90%, however the neurodevelopmental outcomes for survivors remain incompletely understood. Prior to laser therapy, at least one in five survivors of TTTS had serious adverse neurodevelopmental outcomes (usually cerebral palsy). Current estimates of neurological impairment among survivors following laser surgery vary from 4 to 31% and long-term follow-up data are limited.MethodsThis paper describes the methodology for a retrospective cohort study in which children aged 24 months and over (corrected for prematurity), who were treated with laser placental photocoagulation for TTTS at Monash Health in Victoria, Australia, will undergo comprehensive neurodevelopmental assessment by a multidisciplinary team. Evaluation will include parental completion of pre-assessment questionnaires of social and behavioural development, a standardised medical assessment by a developmental paediatrician or paediatric neurologist, and age-appropriate cognitive and academic, speech and fine and gross motor assessments by psychologists, speech and occupational therapists or physiotherapists. Assessments will be undertaken at the Murdoch Children's Research Institute/Royal Children's Hospital, at Monash Health or at another mutually agreed location. Results will be recorded in a secure online database which will facilitate future related research.DiscussionThis will be the first study to report and evaluate neurodevelopmental outcomes following laser surgery for twin-to-twin transfusion syndrome in Victoria, and will inform clinical practice regarding follow-up of children at risk of adverse outcomes.
| S-EPMC6090765 | biostudies-literature
Project description:Using patient-reported experiences, this study: 1) quantitatively evaluated TTTS screening trends, 2) examined screening and diagnostic experiences using a mixed methods approach, and 3) determined gaps in clinical care experiences.This was a cross-sectional study. Data was collected using a self-report, retrospective survey. A triangulation design was used to validate quantitative survey data with thematically analyzed qualitative data.Participants were recruited through social media and national foundations and completed the survey online.Participants were 312 women who completed a TTTS pregnancy in the United States, representing the largest survey of participants who have experienced TTTS.Descriptive statistics and bivariate analyses were conducted. Multivariate logistic regression examined predictors of ultrasound frequency. Qualitative data were initially coded by hand and checked using qualitative software.The percentages of participants reporting guideline recommended screening, including identification of pregnancy type by gestational week 13 and timely receipt of ultrasounds, increased over time. However, 44.6% of participants diagnosed in recent years (2014 and later), reported that prior to TTTS diagnosis, they did not receive biweekly or more frequent ultrasounds. Three patient-reported provider practices were related to receiving ultrasounds at the recommended frequency: (1) determining MCDA status prior to gestational week 14, (2) providing participants with early warnings about the risk of TTTS to their pregnancies after MCDA status had been determined, and (3) referring participants to a Maternal-Fetal Medicine Specialist after MCDA identification, as validated by qualitative data. Our qualitative data revealed gaps in effective clinical care experiences among OB/GYN and specialist providers.These findings indicate screening and diagnosis for TTTS, as reported by patients, is improving in the United States; however, further efforts are required to ensure all patients receive appropriate screening, education and a team-based approach to comprehensive and supportive clinical care.
| S-EPMC6033438 | biostudies-other
Project description:OBJECTIVE:To determine the incidence, complications, management, and outcome in infants with twin-twin transfusion syndrome (TTTS) over a period of five years. METHODS:TTTS was diagnosed in monochorionic twins if one was pale and the other plethoric with a haemoglobin difference > or =5 g/100 ml and/or birthweight differences > or =15%. RESULTS:Eighteen (6.2%) of the 292 twin pairs had TTTS. Eight pairs (44%) had the acute type and the rest (56%) had the chronic type of TTTS. The mean (SEM) intrapair haemoglobin difference in the acute type was 4.8 (2.1) g/100 ml which gave a discordance of 7.1 (4.6)%, whereas that in the chronic type was 6.9 (2.9) g/100 ml and 24.4 (6.1)% respectively. Infants with the acute type had a significantly higher incidence of vaginal delivery (p<0.03), hypotension (p<0.025), and respiratory distress (p<0.01) compared with those with the chronic type. There was no significant difference in the incidence of anaemia, polycythaemia, asphyxia, hypoglycaemia, and hyperbilirubinaemia. Two recipients died in utero as the result of chronic TTTS, while their survivors developed spastic cerebral palsy. There were no neonatal deaths. CONCLUSIONS:TTTS, although uncommon, may have an adverse neurodevelopmental outcome especially if one twin dies in utero. Prompt recognition and management of the haemodynamic and haematological problems of infants with the acute types of TTTS will result in optimal neurodevelopmental outcome.
| S-EPMC1721171 | biostudies-literature
Project description:Background The maternal and fetal risks of uterine distension in rapidly progressive twin-twin transfusion syndrome (TTTS) in the setting of prior uterine scar are poorly characterized. Case We present the case of a 42-year-old woman, G4P1201, at 21 weeks gestation with stage-1 TTTS who developed a spontaneous posterior uterine rupture necessitating emergent laparotomy and delivery of previable fetuses, possibly due to prior uterine scar from a displaced intrauterine device. Conclusion TTTS may be a risk factor for uterine rupture, including uterine rupture in atypical anatomic locations. Prior unrecognized uterine scars, including perforations, may magnify the risk for atypical uterine rupture in the setting of excessive uterine distension.
| S-EPMC4737637 | biostudies-other
Project description:Background We report a case of dizygotic monochorionic triamniotic triplet pregnancy. Twin-twin transfusion syndrome was subsequently diagnosed combined with sex discordance in the two surviving fetuses after one fetus was reduced, which is extremely rare and has not been previously reported. Case Presentation After reducing one fetus by radiofrequency ablation of a monochorionic triamniotic triplet pregnancy, twin-twin transfusion syndrome was subsequently diagnosed combined with sex discordance in the two surviving fetuses. Amniotic fluid for chromosome analysis showed normal karyotype 46, XY/46, XX of the donor and recipient fetus, and short tandem repeat (STR) analysis revealed dizygotic twins. Conclusions Through this is an unusual case, we aim to emphasize the importance of accurate diagnosis of chorionicity and zygosity in sex discordant triplet pregnancy, which is the key to appropriate clinical management.
| S-EPMC9280862 | biostudies-literature
Project description:BACKGROUND:Twin-twin transfusion syndrome (TTTS) is a highly morbid condition in which treatment exists, but the pregnancy remains high-risk until delivery. It may have serious sequelae, including fetal death, and in the longer term, neurodevelopmental problems. The aim of this study is to assess antenatal and postnatal parental attachment and depressive symptoms in those with pregnancies affected by TTTS. METHODS:Couples attending for fetoscopic laser ablation treatment of TTTS were asked to complete Condon's Maternal/Paternal Antenatal/Postnatal Attachment Scale as appropriate, and the Edinburgh Depression Scale the day before ablation, 4?weeks post-ablation, and 6-10?weeks postnatally. RESULTS:25/27 couples completed the pre-ablation questionnaire (median gestational age 19?+?3?weeks [interquartile range 18?+?2-20?+?6]). 8/18 eligible couples returned the post-ablation questionnaire. 5/17 eligible couples returned the postnatal questionnaire. There was no significant difference in parento-fetal attachment when mothers were compared to fathers at each time point, however parento-fetal attachment did increase over time in mothers (p?=?0.004), but not fathers. Mothers reported more depressive symptoms antenatally compared to fathers (p?<?0.02), but there was no difference postnatally. 50% women reported Edinburgh Depression Scale scores above the cut-off (?15) 4?weeks post-ablation. Over time maternal depressive symptoms decreased (p?=?0.006), however paternal depressive symptoms remained the same. CONCLUSIONS:This is the first attachment and depression study in a UK cohort of parents with pregnancies affected by TTTS. Although this was a small cohort and the questionnaires used had not been validated in these circumstances, the results suggest that centres caring for these couples should be aware of the risk of maternal and paternal antenatal depression, and screen and refer for additional psychological support. Further work is needed in larger cohorts. TRIAL REGISTRATION:ISRCTN 13114861 (retrospectively registered).
| S-EPMC6938629 | biostudies-literature
Project description:BackgroundEpigenetic mechanisms are thought to be critical in mediating the role of the intrauterine environment on lifelong health and disease. Twin-twin transfusion syndrome (TTTS) is a rare condition wherein fetuses share the placenta and develop vascular anastomoses, which allow blood to flow between the fetuses. The unequal flow results in reciprocal hypo- and hypervolemia in the affected twins, striking growth differences and physiologic adaptations in response to this significant stressor. The donor twin in the TTTS syndrome can be profoundly growth restricted and there is likely a nutritional imbalance between the twins. The consequences of TTTS on fetal programming are unknown. This condition can now be effectively treated through the use of fetal laparoscopic procedures, but the potential for lifelong morbidity related to this condition during development is apparent. As this condition and the resulting uteroplacental discordance can play a role in the epigenetic process, we sought to investigate the DNA methylation profiles of childhood survivors of TTTS (n = 14). We focused on differences in both global measures and genome-wide CpG specific DNA methylation between donor and recipient children in this pilot study in order to generate hypotheses for further research.ResultsWe identified significant hypomethylation of the LINE1 repetitive element in the peripheral blood of donor children and subtle variation in the genome-wide profiles of CpG specific methylation most prominent at CpG sites which are targets for polycomb group repressive complexes.ConclusionsThese preliminary results suggest that coordinated epigenetic alterations result from the intrauterine environment experienced by infants with TTTS and may, at least in part, be responsible for downstream health conditions experienced by individuals surviving this condition.
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Project description:The aim of this study was to explore whether oral health was an important consideration for Aboriginal and Torres Strait Islander women during pregnancy, whether oral health could be promoted by Aboriginal health staff, and strategies that would be appropriate to use in a new model of care. A qualitative descriptive methodology underpinned the study. All participants in this study identified as Aboriginal, with no Torres Strait Islander participants, and were from New South Wales, Australia. The interviews were analysed using inductive thematic analysis. From the data, two themes were constructed. The first theme identified that oral health was not always the first priority for participants as poor accessibility alongside other competing commitments were challenges to accessing oral health services. The second theme highlighted how relationships with personal networks and healthcare providers were essential and could be used to support maternal oral health during pregnancy. Effective strategies to promote oral health during pregnancy for Aboriginal and Torres Strait Islander women should involve key stakeholders and health care providers, like Aboriginal Health Workers, to facilitate culturally safe support and tailored oral health advice.
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