scholarly journals Content and Quality of Information Websites About Congenital Heart Defects Following a Prenatal Diagnosis

2015 ◽  
Vol 4 (1) ◽  
pp. e4 ◽  
Author(s):  
Tommy Carlsson ◽  
Gunnar Bergman ◽  
Anna-Malin Karlsson ◽  
Elisabet Mattsson
Keyword(s):  
Prenatal Diagnosis ◽  
Congenital Heart Defects ◽  
Congenital Heart ◽  
Heart Defects ◽  
Quality Of Information

scholarly journals Quality of Patient Information Websites About Congenital Heart Defects: Mixed-Methods Study of Perspectives Among Individuals With Experience of a Prenatal Diagnosis

2017 ◽  
Vol 6 (2) ◽  
pp. e15 ◽  
Author(s):  
Tommy Carlsson ◽  
Ulla Melander Marttala ◽  
Barbro Wadensten ◽  
Gunnar Bergman ◽  
Ove Axelsson ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Prenatal Diagnosis ◽  
Congenital Heart Defects ◽  
Patient Information ◽  
Congenital Heart ◽  
Heart Defects ◽  
Mixed Methods Study

scholarly journals A National Comparative Investigation of Twins With Congenital Heart Defects for Neurodevelopmental Outcomes and Quality of Life (Same Same, but Different?): Protocol for a Prospective Observational Study (Preprint)

2020 ◽  
Author(s):  
Julia Remmele ◽  
Paul Christian Helm ◽  
Renate Oberhoffer-Fritz ◽  
Ulrike MM Bauer ◽  
Thomas Pickardt ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Congenital Heart Defects ◽  
Congenital Heart ◽  
Heart Defects ◽  
Confounding Factors ◽  
Fourth Edition ◽  
Neurodevelopmental Outcomes ◽  
Motor Competence ◽  
Intelligence Scale

BACKGROUND Due to the increased survival rates of patients with congenital heart defects (CHD), associated disorders are an increasing focus of research. Existing studies figured out an association between CHD and its treatment, and neurodevelopmental outcomes including motor competence impairments. All these studies, however, compared their test results with reference values or results of healthy control groups. This comparison is influenced by socioeconomic and genetic aspects, which do have a known impact on neurodevelopmental outcomes. OBJECTIVE This study protocol describes a setting that aims to find out the role of CHD and its treatments on neurodevelopmental outcomes, excluding socioeconomic and genetic aspects. Only a twin comparison provides the possibility to exclude these confounding factors. METHODS In a German-wide prospective cohort study, 129 twin siblings registered in the National Register for Congenital Heart Defects will undergo testing on cognitive function (Wechsler Intelligence Tests age-dependent: Wechsler Adult Intelligence Scale, fourth edition; Wechsler Intelligence Scale for Children, fifth edition; and Wechsler Preschool and Primary Scale of Intelligence, fourth edition) and motor competence (Movement Assessment Battery for Children, second edition). Additionally, the self-reported health-related quality of life (KINDL-R for children, Short Form 36 for adults) and the parent-reported strength and difficulties of the children (Strength and Difficulties Questionnaire, German version) will be assessed by standardized questionnaires. CHD data on the specific diagnosis, surgeries, transcatheter procedures, and additional medical information will be received from patient records. RESULTS The approval of the Medical Ethics Committee Charité Mitte was obtained in June 2018. After getting funded in April 2019, the first enrollment was in August 2019. The study is still ongoing until June 2022. Final results are expected in 2022. CONCLUSIONS This study protocol provides an overview of the study design’s technical details, offering an option to exclude confounding factors on neurodevelopmental outcomes in patients with CHD. This will enable a specific analysis focusing on CHD and clinical treatments to differentiate in terms of neurodevelopmental outcomes of patients with CHD compared to twin siblings with healthy hearts. Finally, we aim to clearly define what is important to prevent patients with CHD in terms of neurodevelopmental impairments to be able to develop targeted prevention strategies for patients with CHD. CLINICALTRIAL German Clinical Trials Register DRKS00021087; https://tinyurl.com/2rdw8w67 INTERNATIONAL REGISTERED REPORT DERR1-10.2196/26404

Immediate and long-term outcomes in children with prenatal diagnosis of selected isolated congenital heart defects

2007 ◽  
Vol 29 (1) ◽  
pp. 38-43 ◽  
Author(s):  
I. B. Fuchs ◽  
H. Müller ◽  
H. Abdul-Khaliq ◽  
T. Harder ◽  
J. W. Dudenhausen ◽  
...  
Keyword(s):  
Prenatal Diagnosis ◽  
Congenital Heart Defects ◽  
Congenital Heart ◽  
Heart Defects ◽  
Long Term Outcomes

scholarly journals Patient-reported quality of life outcomes for children with serious congenital heart defects

2014 ◽  
Vol 99 (5) ◽  
pp. 413-419 ◽  
Author(s):  
R. L. Knowles ◽  
T. Day ◽  
A. Wade ◽  
C. Bull ◽  
C. Wren ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Congenital Heart Defects ◽  
Congenital Heart ◽  
Heart Defects ◽  
Life Outcomes ◽  
Quality Of Life Outcomes ◽  
Patient Reported ◽  
Outcomes For Children

Prenatal Diagnosis of Congenital Heart Defects in Thoracoabdominally Conjoined Twins

1985 ◽  
Vol 313 (6) ◽  
pp. 370-374 ◽  
Author(s):  
Stephen P. Sanders ◽  
Alvin J. Chin ◽  
Ira A. Parness ◽  
Beryl Benacerraf ◽  
Michael F. Greene ◽  
...  
Keyword(s):  
Prenatal Diagnosis ◽  
Congenital Heart Defects ◽  
Congenital Heart ◽  
Heart Defects ◽  
Conjoined Twins

scholarly journals PRENATAL DIAGNOSIS OF CONGENITAL HEART DEFECTS: DOES IT MAKE A DIFFERENCE IN SURVIVAL?

2013 ◽  
Vol 61 (10) ◽  
pp. E476
Author(s):  
Matthew Oster ◽  
Christopher H. Kim ◽  
Aaron S. Kusano ◽  
Janet D. Cragan ◽  
Paul B. Dressler ◽  
...  
Keyword(s):  
Prenatal Diagnosis ◽  
Congenital Heart Defects ◽  
Congenital Heart ◽  
Heart Defects

scholarly journals Prenatal diagnosis of congenital heart defects: accuracy and discrepancies in a multicenter cohort

2016 ◽  
Vol 47 (5) ◽  
pp. 616-622 ◽  
Author(s):  
C. L. van Velzen ◽  
S. A. Clur ◽  
M. E. B. Rijlaarsdam ◽  
E. Pajkrt ◽  
C. J. Bax ◽  
...  
Keyword(s):  
Prenatal Diagnosis ◽  
Congenital Heart Defects ◽  
Congenital Heart ◽  
Heart Defects ◽  
Multicenter Cohort

Potential role of “omics” technique in prenatal diagnosis of congenital heart defects

2018 ◽  
Vol 482 ◽  
pp. 185-190
Author(s):  
Lizhu Chen ◽  
Johnny Guan ◽  
Qiuju Wei ◽  
Zhengwei Yuan ◽  
Mo Zhang
Keyword(s):  
Prenatal Diagnosis ◽  
Congenital Heart Defects ◽  
Congenital Heart ◽  
Potential Role ◽  
Heart Defects

scholarly journals P25.02: Beneficial effect of prenatal diagnosis of congenital heart defects over a ten year period in a referral center

2009 ◽  
Vol 34 (S1) ◽  
pp. 272-272
Author(s):  
P. M. van Brussel ◽  
J. Ottenkamp ◽  
C. Bilardo ◽  
S. B. Clur
Keyword(s):  
Prenatal Diagnosis ◽  
Beneficial Effect ◽  
Congenital Heart Defects ◽  
Congenital Heart ◽  
Heart Defects ◽  
Referral Center
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