scholarly journals Physical Functioning, Mental Health, and Quality of Life in Different Congenital Heart Defects: Comparative Analysis in 3538 Patients From 15 Countries

2020 ◽  
Author(s):  
Philip Moons ◽  
Koen Luyckx ◽  
Corina Thomet ◽  
Werner Budts ◽  
Junko Enomoto ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Comparative Analysis ◽  
Congenital Heart Defects ◽  
Physical Functioning ◽  
Congenital Heart ◽  
Heart Defects

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

Health-Related Quality of Life Experienced by Children With Chromosomal Abnormalities and Congenital Heart Defects

2013 ◽  
Vol 35 (3) ◽  
pp. 536-541 ◽  
Author(s):  
Gonzalo Garcia Guerra ◽  
◽  
Ari R. Joffe ◽  
Charlene M. T. Robertson ◽  
Joseph Atallah ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Congenital Heart Defects ◽  
Congenital Heart ◽  
Chromosomal Abnormalities ◽  
Heart Defects ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

scholarly journals Quality of life and congenital heart defects: comparing parent and professional values

2007 ◽  
Vol 92 (5) ◽  
pp. 388-393 ◽  
Author(s):  
R. L Knowles ◽  
I. Griebsch ◽  
C. Bull ◽  
J. Brown ◽  
C. Wren ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Congenital Heart Defects ◽  
Congenital Heart ◽  
Heart Defects ◽  
Professional Values

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

10.2196/26404 ◽  
2021 ◽  
Vol 10 (5) ◽  
pp. e26404
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. Trial Registration German Clinical Trials Register DRKS00021087; https://tinyurl.com/2rdw8w67 International Registered Report Identifier (IRRID) DERR1-10.2196/26404

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