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:BackgroundTwin-to-twin transfusion syndrome (TTTS) is a severe condition causing preterm delivery, fetal death, and neurodevelopmental disorders. This study presents a data-based controlled amnioreduction (AR) protocol composed of sequential amniodrainage in treatment of TTTS.MethodsA total of 18 procedures were performed in 11 TTTS pregnancies at 17 to 34 weeks of gestation. The amniotic pressure was measured along with sequential removal of the amniotic fluid, 500 mL each step. The umbilical artery systolic/diastolic (S/D) ratio for each twin was measured pre- and post-AR. Long-term neurodevelopmental outcomes of all TTTS survivors were evaluated from parental answers to a phone survey.ResultsThe amniotic pressure decreased exponentially with the increased volume of removed amniotic fluid until a plateau was obtained. Changes of the S/D ratio between pre- and post-AR procedure did not reveal a clear tendency. The survival rate was 86.4% although 91% of all twins were at Quintero stage III. Long-term neurodevelopment outcomes in the 19 surviving twins were 68.4% optimal, 26.3% suboptimal, and 5.3% abnormal.ConclusionThe controlled AR procedure resulted in a relatively high rate of twin survival with favorable long-term neurodevelopment outcomes.
| S-EPMC8969010 | biostudies-literature
Project description:BackgroundWe 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 presentationAfter 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.ConclusionsThrough 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 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:ObjectiveWomen of reproductive age who have autoimmune rheumatic diseases [ARDs] have expressed a need to be better supported with making decisions about pregnancy. Women with ARDs want their motherhood identities and associated preferences to be taken into account in decisions about their healthcare. The aim of this study was to explore the interplay between illness and motherhood identities of women with ARDs during preconception decision making.MethodsTimeline-facilitated qualitative interviews with women diagnosed with an ARD [18-49 years old]. Participants were purposively sampled based on the following three criteria: thinking about getting pregnant, currently pregnant, or had young children. Interviews were thematically analysed.ResultsTwenty-two women were interviewed face-to-face [N = 6] or over the telephone [N = 16]. Interview length ranged from 20 minutes to 70 minutes, with a mean length of 48 minutes. Three main themes were identified: prioritisation, discrepancy, and trade-off. Difficulties in balancing multiple identities in healthcare encounters were reported. Women used 'self-guides' as a reference for priority setting in a dynamic process that shifted as their level of disease activity altered and as their motherhood identity became more or less of a focus at a given point in time. Women's illness and motherhood identities did not present in isolation but were intertwined.ConclusionsFindings highlight the need for holistic person-centred care that supports women with the complex and emotive decisions relating to preconception decision-making. In practice, health professionals need to consider women's multiple and sometimes conflicting identities, and include both their condition and family associated goals and values within healthcare communication.
| S-EPMC9635698 | biostudies-literature
Project description:Monochorionic-diamniotic twin pregnancies are susceptible to unique complications arising from a single placenta shared by two fetuses. Twin-twin transfusion syndrome (TTTS) is a constellation of disturbances caused by unequal blood flow within the shared placenta giving rise to a major hemodynamic imbalance between the twins. Here, we applied TTTS as a model to uncover fetal metabolic adaptations to cardiovascular stress. We compared untargeted metabolomic analyses of amniotic fluid samples from severe TTTS cases vs. singleton controls. Amniotic fluid metabolites demonstrated alterations in fatty acid, glucose, and steroid hormone metabolism in TTTS. Among TTTS cases, unsupervised principal component analysis revealed two distinct clusters of disease defined by levels of glucose metabolites, amino acids, urea, and redox status. Our results suggest that the human fetal heart can adapt to hemodynamic stress by modulating its glucose metabolism and identify potential differences in the ability of individual fetuses to respond to cardiovascular stress.
| S-EPMC10415929 | biostudies-literature
Project description:BackgroundTwin-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.MethodsCouples 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.Results25/27 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.ConclusionsThis 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 registrationISRCTN 13114861 (retrospectively registered).
| S-EPMC6938629 | biostudies-literature