Dataset Information

Twin-twin transfusion syndrome screening and diagnosis in the United States: A triangulation design of patient experiences.

ABSTRACT: 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.

SUBMITTER: Fischbein R

PROVIDER: S-EPMC6033438 | biostudies-other | 2018

REPOSITORIES: biostudies-other

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Twin-twin transfusion syndrome screening and diagnosis in the United States: A triangulation design of patient experiences.

Fischbein Rebecca R Nicholas Lauren L Aultman Julie J Baughman Kristin K Falletta Lynn L

PloS one 20180705 7

<h4>Objective</h4>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.<h4>Design</h4>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.<h4>Setting</h4>Participan ...[more]

PMID: 29975770

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Project description:ObjectiveTo evaluate the peripartum transfusion rates for rural women compared with urban women in the United States.MethodsIn this population-based retrospective cohort study, geocoded birth records from 2014 to 2016 from the National Center for Health Statistics were used to examine the rural-urban differences in blood transfusion among nulliparous women delivering singleton, vertex pregnancies at term. We compared transfusion rates across the counties on a continuum from urban to rural. We generated a multivariable logistic regression model controlling for age, race, nativity, education, insurance, prenatal care, maternal health, gestational age, intrapartum care, mode of delivery, peripartum factors, and county of delivery.ResultsAmong 3,346,816 births, the transfusion rates based on maternal county of residence increased as the counties became more rural: large metropolitan-center (1.9/1,000 live births); large metropolitan-fringe (2.4); medium metropolitan (2.6); small metropolitan (2.6); micropolitan (4.5); and noncore rural (5.3). Rural women living and delivering in a rural county had more transfusions (8.5/1,000 live births) than women in more urban counties (2.5/1,000). After adjusting for key covariates, the odds of transfusion were higher among women living in micropolitan (adjusted odds ratio [aOR] 2.25, 95% CI 2.09-2.43) and noncore rural (aOR 2.59, 95% CI 2.38-2.81) counties when compared with women living in large metropolitan counties. County of delivery had a higher association with transfusion than resident county. After adding delivery county to the regression model, the association of transfusion and living in a micropolitan (aOR 1.39, 95% CI 1.19-1.63) or noncore rural (aOR 1.32, 95% CI 1.12-1.55) county diminished.ConclusionThe odds of blood transfusion were higher for women in rural areas. The results indicate that the rurality of the county where the birth occurred was associated with more transfusion. This may reflect differences in maternity and blood banking services in rural hospitals and warrants further study to identify opportunities for intervention.

Dataset Information

Twin-twin transfusion syndrome screening and diagnosis in the United States: A triangulation design of patient experiences.

Publications

Twin-twin transfusion syndrome screening and diagnosis in the United States: A triangulation design of patient experiences.

Similar Datasets

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