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Andersons pediatric cardiology 278

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Summary Counseling for a prenatal diagnosis of CHD is extremely challenging and requires knowledge, skills, experience, and an adequately resourced and cohesive team As the diagnosis of fetal CHD results in high levels of parental stress, it is vital that parents receive timely, empathetic and accurate information along with emotional and practical support from the multidisciplinary team early in the diagnosis, through initial decision making, for the remainder of the pregnancy and well into the perinatal and neonatal period Annotated References Arya B, Glickstein JS, Levasseur SM, Williams IA Parents of children with congenital heart disease prefer more information than cardiologists provide Congenit Heart Dis 2013;8(1):78–85 An important study illustrating that parents of children with CHD prefer to receive more counseling and educational information in the prenatal and neonatal periods than cardiologists believe is desired or warranted Bensemlali M, Stirnemann J, Le Bidois J, et al Discordances between pre-natal and post-natal diagnoses of congenital heart diseases and impact on care strategies J Am Coll Cardiol 2016;68(9):921–930 An important study showing the variance between expert prenatal diagnosis and final confirmed diagnosis made postnatally or by fetopsies Bratt EL, Järvholm S, Ekman-Joelsson BM, et al Parent's experiences of counselling and their need for support following a prenatal diagnosis of congenital heart disease-a qualitative study in a Swedish context BMC Pregnancy Childbirth 2015;15:171 A recent study that outlines parents’ experiences of a prenatal diagnosis of CHD and gives recommendations for how to structure counseling and follow-up to meet parents’ needs Brosig CL, Bear L, Allen S, et al Preschool neurodevelopmental outcomes in children with congenital heart disease J Pediatr 2017;183:80–86 A study showing that most children with CHD without comorbid genetic conditions do not have severe delays For those without genetic conditions, neurodevelopmental delays did not differ between those with single ventricle and biventricular physiologies Costello JM, Mussatto K, Cassedy A, et al Prediction by clinicians of quality of life for children and adolescents with cardiac disease J Pediatr 2015;166(3):679–683 This study found that physicians and nurses who routinely care for cardiac patients had poor reliability for predicting patient and parentproxy reported Health-Related Quality of Life (HRQOL) It also found poor agreement between clinician categories when predicting patient and parent-proxy reported HRQOL Hilton-Kamm D, Sklansky M, Chang RK How not to tell parents about their child's new diagnosis

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