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 (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 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

Sense of coherence as a predictor of quality of life in adolescents with congenital heart defects: A register-based 1-year follow-up study

2011 ◽  
Vol 26 (S2) ◽  
pp. 560-560 ◽  
Author(s):  
B. Neuner ◽  
M. Busch ◽  
J. Wellmann ◽  
U. Nowak-Göttl ◽  
H.-W. Hense
Keyword(s):  
Quality Of Life ◽  
Congenital Heart Defects ◽  
Sense Of Coherence ◽  
Congenital Heart ◽  
Linear Models ◽  
Heart Defects ◽  
Well Being ◽  
Psychological Well Being

ObjectiveSense of coherence (SOC) is a resource for health and quality of life (QoL) in adults. Aim of this investigation was to evaluate the association of SOC and QoL in adolescents with congenital heart defects (CHD).MethodObservational study among 770 adolescents aged 14 – 17 years from a national CHD register. SOC was measured at baseline with the SOC-L9 questionnaire. At baseline and at 12-months follow-up, QoL was measured with the KINDL-R questionnaire, evaluating overall well-being and six subscales. The association of SOC with QoL was evaluated in multi-level linear models separately for overall well-being and KINDL-R subscales. Initial models comprised SOC as only fixed effect while the final models were adjusted for age, gender, medical and socioeconomic status and behavioral factors.ResultsOverall well-being, self-esteem and school-related well-being was significantly higher at follow-up compared with baseline. SOC at baseline (median 50 [range: 16 – 63] points) was positively associated with overall well-being and all KINDL-R subscales. There were significant negative interactions between SOC at baseline and time to follow-up for overall well-being and all KINDL-R subscales except psychological well-being. But even in fully adjusted models associations of SOC at baseline with overall well-being and all KINDL-R subscales at follow-up remained significant.ConclusionSOC is an independent predictor of QoL in adolescents with CHD. Except for psychological well-being, this effect attenuates over one year but remains positive inoverall QoL and sub-dimensions. Further studies should evaluate whether interventions aimed to increase SOC in children with CHD improve QoL.

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