Dataset Information

Counseling for Prenatal Congenital Heart Disease-Recommendations Based on Empirical Assessment of Counseling Success.

ABSTRACT: Objectives: Empirical assessment of parental needs and affecting factors for counseling success after prenatal diagnosis of congenital heart disease (CHD). Methods:Counseling success after fetal diagnosis of CHD was assessed by a validated standardized questionnaire. The dependent variable "Effective Counseling" was measured in five created analytical dimensions (1. "Transfer of Medical Knowledge-ToMK"; 2. "Trust in Medical Staff-TiMS"; 3. "Transparency Regarding the Treatment Process-TrtTP"; 4. "Coping Resources-CR"; 5. "Perceived Situational Control-PSC"). Analyses were conducted with regard to influencing factors and correlations. Results: Sixty-one individuals (n = 40 females, n = 21 males) were interviewed in a tertiary medical care center. Median gestational age at first parental counseling was 28 + 6 weeks. Parental counseling was performed four times (median), mostly by pediatric cardiologists (83.6%). Overall counseling was successful in 46.3%, satisfying in 51.9%, and unsuccessful in 1.9%. Analyses of the analytical dimensions show that counseling was less successful for TOMK (38.3%) and PSC (39%); success rates were higher if additional written information or links to web sources were provided (60 and 70%, respectively). Length of consultation was positively correlated to counseling success for ToMK (r = 0.458), TrtTP (r = 0.636), PSC (r = 0.341), and TiMS (r = 0.501). Interruptions were negatively correlated to the dimensions TiMS (r = -0.263), and TrtTP (r = -0.210). In the presence of high-risk CHD (37.5%) overall counseling success was lower (26.1%). By cross table analysis and to a low degree of positive correlation in one dimension (ToMK; r = 0.202), counseling tends to be less successful for ToMK, TrtTP, and TiMS if parents have not been counseled by cardiologists. Analyses regarding premises show a parental need for a separate counseling room, which significantly impacts ToMK (r = -0,390) and overall counseling success (r = -0.333). A language barrier was associated with lower success rates for ToMK, TiMS, and CR (21.4, 42.9, and 30.8%). Conclusions: Data from this multidisciplinary study indicate that parents after fetal diagnosis of CHD need uninterrupted counseling of adequate duration and quality in a separate counseling room. Providing additional written information or links to adequate web sources after initial counseling seems necessary. High-risk CHD needs more attention for counseling. There is a trend towards more counseling success if provided by cardiologists.

SUBMITTER: Kovacevic A

PROVIDER: S-EPMC7054339 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Counseling for Prenatal Congenital Heart Disease-Recommendations Based on Empirical Assessment of Counseling Success.

Kovacevic Alexander A Simmelbauer Andreas A Starystach Sebastian S Elsässer Michael M Müller Andreas A Bär Stefan S Gorenflo Matthias M

Frontiers in pediatrics 20200226

Objectives: Empirical assessment of parental needs and affecting factors for counseling success after prenatal diagnosis of congenital heart disease (CHD). Methods:Counseling success after fetal diagnosis of CHD was assessed by a validated standardized questionnaire. The dependent variable "Effective Counseling" was measured in five created analytical dimensions (1. "Transfer of Medical Knowledge-ToMK"; 2. "Trust in Medical Staff-TiMS"; 3. "Transparency Regarding the ...[more]

PMID: 32175290

Similar Datasets

Project description:Altered brain development is a common feature of the neurological sequelae of complex congenital heart disease (CHD). These alterations include abnormalities in brain size and growth that begin prenatally and persist postnatally. However, the longitudinal trajectory of changes in brain volume from the prenatal to postnatal environment have not been investigated. We aimed to evaluate the trajectory of brain growth in a cohort of patients with complex CHD (n?=?16) and healthy controls (n?=?15) to test the hypothesis that patients with complex CHD would have smaller total brain volume (TBV) prenatally, which would become increasingly prominent by three months of age. Participants underwent fetal magnetic resonance imaging (MRI) at a mean of 32?weeks gestation, a preoperative/neonatal MRI shortly after birth, a postoperative MRI (CHD only), and a 3-month MRI to evaluate the trajectory of brain growth. Three-dimensional volumetric analysis was applied to the MRI data to measure TBV, as well as tissue-specific volumes of the cortical gray matter (CGM), white matter (WM), subcortical (deep nuclear) gray matter (SCGM), cerebellum, and cerebrospinal fluid (CSF). A random coefficients model was used to investigate longitudinal changes in TBV and demonstrated an altered trajectory of brain growth in the CHD population. The estimated slope for TBV from fetal to 3-month MRI was 11.5?cm3 per week for CHD infants compared to 16.7?cm3 per week for controls (p?=?0.0002). Brain growth followed a similar trajectory for the CGM (p?<?0.0001), SCGM (p?=?0.002), and cerebellum (p?=?0.005). There was no difference in growth of the WM (p?=?0.30) or CSF (p?=?0.085). Brain injury was associated with reduced TBV at 3-month MRI (p?=?0.02). After removing infants with brain injury from the model, an altered trajectory of brain growth persisted in CHD infants (p?=?0.006). These findings extend the existing literature by demonstrating longitudinal impairments in brain development in the CHD population and emphasize the global nature of disrupted brain growth from the prenatal environment through early infancy.

Project description:We aim to explore the link between maternal weekly temperature exposure and CHD in offspring and identify the relative contributions from heat and cold and from moderate and extreme atmospheric temperature. From January 2019 to December 2020, newborns who were diagnosed with CHD by echocardiography in the Network Platform for Congenital Heart Disease (NPCHD) from 11 cities in eastern China were enrolled in the present study. We appraised the exposure lag response relationship between temperature and CHDs in the distributed lag nonlinear model and further probed the pooled estimates by multivariate meta-analysis. We further performed the exposure-response curves in extreme temperature (5th percentile for cold and 95th for hot events). We also delve into the cumulative risk ratios (CRRs) of temperature on CHDs in general and subgroups. In this study, 5904 of 983, 523 infants were diagnosed with CHDs. The temperature-CHD combination performed positive significance in two exposure windows, gestational weeks 10-16 and 26-31, and reached the maximum effect in the 28th week. Compared with extreme cold (5th, 6.14℃), these effects were higher in extreme heat (95th, 29.26℃). The cumulative exposure-response curve showed a steep nonlinear rise in the hot tail but showed non-significance at low temperatures. In this range, the CRRs of temperature showed an increment to a ceiling of 3.781 (95% CI: 1.460-10.723). The temperature- CHD curves for both sex groups showed a general growth trend. No statistical significance was observed between these two groups (P = 0.106). The cumulative effect of the temperature related CHD was significant in regions with lower education levels (maximum CRR was 9.282 (3.019-28.535)). A degree centigrade increase in temperature exposure was associated with the increment of CHD risk in the first and second trimesters, especially in extreme heat. Neonates born in lower education regions were more vulnerable to temperature-related CHDs.

Project description:AimsCopy number variant-sequencing (CNV-seq) and exome sequencing (ES) have been used as powerful tools in understanding the role of genetic variants in congenital heart diseases (CHDs). A few previous large cohort studies have utilized CNV-seq and ES to investigate prenatally diagnosed CHD. Here, we sought to determine the value of CNV-seq and ES for genetic evaluation of foetal CHDs.Methods and resultsWe recruited 398 pregnant women diagnosed with CHDs between 8 January 2017 and 30 November 2020. CNV-seq and ES were performed on foetal and parent samples. CHD cases were classified following the guidelines of the International Paediatric and Congenital Cardiac Code and the Tenth and Eleventh Revisions of the International Classification of Diseases. Data on aneuploids (AUP), pathogenic CNVs (pCNVs), and single nucleotide variants (SNVs) were collected and compared, following appropriate procedures. We identified genetic abnormalities in 129 (32.41%) foetuses. These abnormalities included AUP (10.80%), pCNVs (13.32%), and SNVs (8.04%). ES analysis yielded higher SNVs in cases without AUP or pCNVs. Non-isolated CHDs were associated with higher genetic abnormalities than isolated CHDs, mainly due to AUP differences between the two groups. The prevalence of genetic defects was the highest in foetuses with atrioventricular septal defects (AVSD), left ventricular outflow tract obstruction (LVOTO), and conotruncal defects (CTD). AVSD and anomalies of atrioventricular junctions and valves were associated with AUP abnormalities. CTD, anomalies of extrapericardial arterial trunks, and anomalies of the ventricular outflow tracts were the most common CHD categories diagnosed using CNVs. The most common CHDs associated with single ventricle (SV) abnormalities were heterotaxy (Hex) (14.89%), LVOTO (14.58%), and ventricular septal defect (VSD) (26.67%, 4/15). Although the ES yields were higher than CNV-seq for VSD (44.4%, 4/9), LVOTO (20%, 7/35), Hex (14.89%, 7/47), and CTD (9.1%, 11/121), its diagnostic yield did not increase for SV (6.7%, 1/15), AVSD (3.8%, 1/26), or right ventricular obstruction defects (2.6%, 1/38). The most common mutations were observed in KMT2D, CHD7, and NOTCH1.ConclusionsTo our knowledge, this is the largest cohort study to investigate the incidence of SNVs using ES in foetal CHD. CNV-seq and ES identified genetic abnormalities in nearly 1/3 of foetal CHD cases. Thus, CNV-seq and ES can provide clinically relevant information for pregnancy management.

Project description:BackgroundThis report evaluates results of a screening program on prenatal detection of congenital heart defects in a geographical cohort of western Sweden between January 1st, 2013 and June 31st, 2017. During the study period 88,230 children were born in VGR.MethodsRetrospective data on pregnant women from the Västra Götaland region that were referred to fetal cardiologists in Gothenburg were retrieved. To determine prenatal detection rate, all neonates who underwent surgery or catheter intervention for a critical congenital heart defect born between January 1st, 2014 and December 31st, 2016 were included. The four-chamber view was implemented into the routine scan in 2009 and implementation of the ISUOG guidelines, including the outflow tracts, started in the region in 2015.Results113 fetuses received a prenatal diagnosis of a major congenital heart defect. 89% of these were referred because of a suspected cardiac malformation and 88% were diagnosed before 22 completed weeks. 59% of the patients diagnosed before 22 completed weeks opted for termination of pregnancy. During 2014-2016, 61 fetuses had a prenatal diagnosis of a critical congenital heart defect and a further 47 were diagnosed after birth, hence 56% were diagnosed prenatally, 82% for those which had a combination with an extracardiac abnormality and/or chromosomal aberration compared to 50% if an isolated critical congenital heart defect was diagnosed. For single ventricle cardiac defects such as hypoplastic left heart syndrome, double inlet left ventricle and tricuspid atresia, the detection rate was 100%. The detection rate for transposition of the great arteries and coarctation of the aorta was 9 and 18% respectively.Conclusions56% of all fetuses with a critical congenital heart defect were diagnosed prenatally during 2014-2016 and approximately 53% of all major congenital heart defects 2013-2017 as compared to 13.8% in 2009 in the same region. An increased focus towards the fetal heart in the routine scan improved the prenatal detection rate of major congenital heart defects. The detection of congenital heart defects affecting the four-chamber view seems sufficient, but more training is needed to improve the quality of the examination of the outflow tracts.

Dataset Information

Counseling for Prenatal Congenital Heart Disease-Recommendations Based on Empirical Assessment of Counseling Success.

Publications

Counseling for Prenatal Congenital Heart Disease-Recommendations Based on Empirical Assessment of Counseling Success.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets