Karolijn Dulfer1, Sjoerd S M Bossers2, Elisabeth M W J Utens1, Nienke Duppen2, Irene M Kuipers3, Livia Kapusta4, Gabrielle van Iperen5, Michiel Schokking4, Arend D J ten Harkel6, Tim Takken7, Willem A Helbing2. 1. 1Department of Child and Adolescent Psychiatry/Psychology,Erasmus Medical Centre-Sophia Children's Hospital,Rotterdam,the Netherlands. 2. 2Department of Paediatrics,Division of Cardiology,Erasmus Medical Centre - Sophia Children's Hospital,Rotterdam,the Netherlands. 3. 3Department of Paediatrics,Division of Cardiology,Academic Medical Centre,Amsterdam,the Netherlands. 4. 4Department of Paediatrics,Division of Cardiology,Radboud University Nijmegen Medical Centre,Nijmegen,the Netherlands. 5. 6Department of Paediatrics,Division of Cardiology,University Medical Centre Utrecht - Wilhelmina Children's Hospital,Utrecht,the Netherlands. 6. 7Department of Paediatrics,Division of Cardiology,Leiden University Medical Centre,Leiden,the Netherlands. 7. 8Child Development and Exercise Centre,University Medical Centre Utrecht - Wilhelmina Children's Hospital,Utrecht,the Netherlands.
Abstract
PURPOSE: It is important to identify those children with a Fontan circulation who are at risk for impaired health-related quality of life. We aimed to determine the predictive value of functional health status - medical history and present medical status - on both physical and psychosocial domains of health-related quality of life, as reported by patients themselves and their parents. METHODS: We carried out a prospective cross-sectional multi-centre study in Fontan patients aged between 8 and 15, who had undergone staged completion of total cavopulmonary connection according to a current technique before the age of 7 years. Functional health status was assessed as medical history - that is, age at Fontan, type of Fontan, ventricular dominance, and number of cardiac surgical procedures - and present medical status - assessed with magnetic resonance imaging, exercise testing, and rhythm assessment. Health-related quality of life was assessed with The TNO/AZL Child Questionnaire Child Form and Parent Form. RESULTS: In multivariate prediction models, several medical history variables, such as more operations post-Fontan completion, lower age at Fontan completion, and dominant right ventricle, and present medical status variables, such as smaller end-diastolic volume, a higher score for ventilatory efficiency, and the presence of sinus node dysfunction, predicted worse outcomes on several parent-reported and self-reported physical as well as psychosocial health-related quality of life domains. CONCLUSIONS: Medical history and worse present medical status not only predicted worse physical parent-reported and self-reported health-related quality of life but also worse psychosocial health-related quality of life and subjective cognitive functioning. These findings will help in identifying patients who are at risk for developing impaired health-related quality of life.
PURPOSE: It is important to identify those children with a Fontan circulation who are at risk for impaired health-related quality of life. We aimed to determine the predictive value of functional health status - medical history and present medical status - on both physical and psychosocial domains of health-related quality of life, as reported by patients themselves and their parents. METHODS: We carried out a prospective cross-sectional multi-centre study in Fontan patients aged between 8 and 15, who had undergone staged completion of total cavopulmonary connection according to a current technique before the age of 7 years. Functional health status was assessed as medical history - that is, age at Fontan, type of Fontan, ventricular dominance, and number of cardiac surgical procedures - and present medical status - assessed with magnetic resonance imaging, exercise testing, and rhythm assessment. Health-related quality of life was assessed with The TNO/AZL Child Questionnaire Child Form and Parent Form. RESULTS: In multivariate prediction models, several medical history variables, such as more operations post-Fontan completion, lower age at Fontan completion, and dominant right ventricle, and present medical status variables, such as smaller end-diastolic volume, a higher score for ventilatory efficiency, and the presence of sinus node dysfunction, predicted worse outcomes on several parent-reported and self-reported physical as well as psychosocial health-related quality of life domains. CONCLUSIONS: Medical history and worse present medical status not only predicted worse physical parent-reported and self-reported health-related quality of life but also worse psychosocial health-related quality of life and subjective cognitive functioning. These findings will help in identifying patients who are at risk for developing impaired health-related quality of life.
Entities:
Keywords:
Fontan circulation; congenital heart disease; quality of life
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