The Fontan outcomes network: first steps towards building a lifespan registry for individuals with Fontan circulation in the United States

2020 ◽  
Vol 30 (8) ◽  
pp. 1070-1075 ◽  
Author(s):  
Tarek Alsaied ◽  
Kiona Y. Allen ◽  
Jeffrey B. Anderson ◽  
Julia S. Anixt ◽  
David W. Brown ◽  
...  
Keyword(s):  
Congenital Heart ◽  
Single Ventricle ◽  
Emotional Health ◽  
The United States ◽  
Fontan Circulation ◽  
Systematic Design ◽  
Neurodevelopmental Outcomes ◽  
New Learning ◽  
Outcomes For Children

AbstractThe Fontan Outcomes Network was created to improve outcomes for children and adults with single ventricle CHD living with Fontan circulation. The network mission is to optimise longevity and quality of life by improving physical health, neurodevelopmental outcomes, resilience, and emotional health for these individuals and their families. This manuscript describes the systematic design of this new learning health network, including the initial steps in development of a national, lifespan registry, and pilot testing of data collection forms at 10 congenital heart centres.

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

Sleep and Health

2021 ◽  
pp. 17-32
Author(s):  
Andrew S. Tubbs ◽  
Michael A. Grandner
Keyword(s):  
Emotional Health ◽  
The United States ◽  
Mental Illnesses ◽  
Poor Sleep ◽  
Drowsy Driving ◽  
Insufficient Sleep ◽  
Disturbed Sleep ◽  
Risk Of Disease ◽  
Common Problems

Sleep is a core component of human physiology, supporting physical, mental, and emotional health. Unfortunately, insufficient sleep and insomnia are increasingly common problems both in the United States and around the world. Poor sleep is strongly associated with diabetes, obesity, and other cardiometabolic diseases. Pro-inflammatory states associated with disrupted sleep schedules and insufficient sleep are hypothesized as risk factors for cancer. Sleep disturbance impairs cognition and memory, increasing the likelihood of accidents and drowsy driving. Poor sleep is a common and exacerbating feature of many mental illnesses and may impair treatment response. Finally, the burden of insufficient sleep is calculated both in financial costs and increased mortality. Given this evidence, clinicians should recognize and treat disturbed sleep to decrease the risk of disease and improve overall quality of life.

Cardiovascular Disorders

2019 ◽  
pp. 309-326
Author(s):  
Lyla E. Hampton ◽  
Abigail C. Demianczyk ◽  
Casey Hoffman
Keyword(s):  
Quality Of Life ◽  
Birth Defects ◽  
Neurodevelopmental Disorders ◽  
Congenital Heart ◽  
Heart Defects ◽  
School Setting ◽  
The United States ◽  
Intervention Strategies ◽  
School Based

Congenital heart disease (CHD) is one of the most common birth defects in the United States, affecting approximately 1% of births per year, with most children surviving into adulthood. Despite improved survival, individuals with CHD remain at high risk for neurological, cognitive, and psychosocial challenges that affect quality of life across the lifespan and have specific implications for working with children with CHD in the school setting. This chapter describes several common complications of CHD, as well as acquired heart defects, that have implications for how children with the conditions present in the school setting. The chapter also provides information about common neurodevelopmental disorders associated with these medical conditions and the effects of the conditions on psychological adjustment and quality of life in children. Finally, the chapter concludes with a review of intervention strategies that school-based professionals may adopt when working with children with heart conditions.

Neurodevelopmental outcomes in congenital heart disease through the lens of single ventricle patients

2021 ◽  
Vol Publish Ahead of Print ◽  
Author(s):  
Joseph Burns ◽  
Robin Varughese ◽  
Madhusudan Ganigara ◽  
Sanjeev V. Kothare ◽  
Lindsey A. McPhillips ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Single Ventricle ◽  
Neurodevelopmental Outcomes

scholarly journals Health-related quality of life for adults living with hepatitis B in the United States: a qualitative assessment

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Catherine Freeland ◽  
Rhea Racho ◽  
Maureen Kamischke ◽  
Kate Moraras ◽  
Evangeline Wang ◽  
...  
Keyword(s):  
Quality Of Life ◽  
United States ◽  
Hepatitis B ◽  
Emotional Health ◽  
The United States ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Chronic Hbv

Abstract Background In 2019, an estimated 296 million people were living with chronic hepatitis B virus (HBV) globally with approximately 2.4 million living within the United States. Those living with HBV require years if not decades of regular monitoring to prevent liver complications from occurring. The aim of this study was to explore the working conceptual framework of health related quality of life (HRQL) for those living with chronic HBV through qualitative analysis. Methods Data were collected by in-depth telephone interviews conducted in 2019 using purposeful sampling as part of a disease understanding assessment on the HBV patient experience within the United States. A directed content analysis approach was utilized by creation of a codebook to guide the organization of data, codes were developed by review of the literature (a priori) and through line-by-line reading of a subsample of queries. All transcripts were analyzed by at least two members of the study team and intercoder reliability was assessed using Dedoose software. Findings A sample of 19 individuals living with chronic HBV were included within this study. Themes identified from transcripts noted the significant overlap between the reported experience of HBV and constructs within the HRQL model. The psychological impact of chronic HBV on study participants’ HRQL overall was considerable and contributed to depression, anxiety, homelessness, drug use, and incarceration. Conclusion Our analysis supports the hypothesis that HBV impacts HRQL and often negatively affects emotional health. Our findings suggest that it would be beneficial to include HRQL assessment in the medical management of HBV, so that interventions can focus on reducing the burden of disease and improving quality of life for those living with HBV.

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

scholarly journals Bedtime Routine Characteristics and Activities in Families with Young Children in the North of England

2021 ◽  
Vol 18 (17) ◽  
pp. 8983
Author(s):  
George Kitsaras ◽  
Michaela Goodwin ◽  
Julia Allan ◽  
Michael P. Kelly ◽  
Iain A. Pretty
Keyword(s):  
The United States ◽  
Routine Activities ◽  
Complex Behaviour ◽  
Time Dynamic ◽  
The North ◽  
Consistent Manner ◽  
Outcomes For Children ◽  
Development Outcomes ◽  
Bedtime Routine

Bedtime routines have been shown to have significant associations with health, wellbeing and development outcomes for children and parents. Despite the importance of bedtime routines, most research has been carried out in the United States, with little information on bedtime routine characteristics and activities for families in other countries such as the United Kingdom and England in particular. Additionally, little is known about the possible effects of weekends vs. weekdays on the quality of bedtime routines. Finally, traditional, retrospective approaches have been most used in capturing data on bedtime routines, limiting our understanding of a dynamic and complex behaviour. The aim of this study was to explore bedtime routine characteristics and activities in families in the North of England with a real-time, dynamic data collection approach and to examine possible effects of weekend nights on the quality of bedtime routines. In total, 185 parents with children ages 3 to 7 years old provided data around their bedtime routine activities using an automated text-survey assessment over a 7-night period. Information on socio-economic and demographic characteristics were also gathered during recruitment. A small majority of parents managed to achieve all crucial elements of an optimal bedtime routine every night, with 53% reporting brushing their children’s teeth every night, 25% reading to their children every night and 30% consistently putting their children to bed at the same time each night. Results showed significant differences between weekend (especially Saturday) and weekday routines (F(1, 100) = 97.584, p < 0.001), with an additional effect for parental employment (F(1, 175) = 7.151, p < 0.05). Results highlight variability in bedtime routine activities and characteristics between families. Many families undertook, in a consistent manner, activities that are closely aligned with good practices and recommendations on what constitutes an optimal bedtime routine, while others struggled. Routines remained relatively stable during weekdays but showed signs of change over the weekend. Additional studies on mechanisms and elements affecting the formation, development and maintenance of bedtime routines are needed alongside studies on supporting and assisting families to achieve optimal routines.

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