Quality of life of children born with a congenital heart defect

Abstract Objectives: The mini right axillary thoracotomy is an alternative surgical approach to repair certain congenital heart defects. Quality-of-life metrics and clinical outcomes in children undergoing either the right axillary approach or median sternotomy were compared. Methods: Patients undergoing either approach for the same defects between 2018 and 2020 were included. Demographic details, operative data, and outcomes were compared between both groups. An abbreviated quality of life questionnaire based on the Infant/Toddler/Child Health Questionnaires focused on the patient’s global health, physical activity, and pain/discomfort was administered to all parents/guardians within two post-operative years. Results: Eighty-seven infants and children underwent surgical repair (right axillary thoracotomy, n = 54; sternotomy, n = 33) during the study period. There were no mortalities in either group. The right axillary thoracotomy group experienced significantly decreased red blood cell transfusion, intubation, intensive care, and hospital durations, and earlier chest tube removal. Up to 1 month, parents’ perception of their child’s degree and frequency of post-operative pain was significantly less after the right axillary thoracotomy approach. No difference was found in the patient’s global health or physical activity limitations beyond a month between the two groups. Conclusions: With the mini right axillary approach, surrogates of faster clinical recovery and hospital discharge were noted, with a significantly less perceived degree and frequency of post-operative pain initially, but without the quality of life differences at last follow-up. While providing obvious cosmetic advantages, the minimally invasive right axillary thoracotomy approach for the surgical repair of certain congenital heart lesions is a safe alternative to median sternotomy.

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Health-Related Quality of Life and Congenital Heart Disease in Australia

Heart Lung and Circulation ◽

10.1016/j.hlc.2012.05.719 ◽

2012 ◽

Vol 21 ◽

pp. S293

Author(s):

K. Eagleson ◽

R. Justo ◽

F. Boyle ◽

R. Ware ◽

S. Johnson

Keyword(s):

Quality Of Life ◽

Congenital Heart Disease ◽

Heart Disease ◽

Congenital Heart ◽

Health Related Quality ◽

Related Quality ◽

Health Related

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Psychosocial well-being and quality of life in siblings of children with congenital heart disease: A systematic review

Journal of Child Health Care ◽

10.1177/13674935211012933 ◽

2021 ◽

pp. 136749352110129

Author(s):

Alice S Schamong ◽

Hannah Liebermann-Jordanidis ◽

Konrad Brockmeier ◽

Elisabeth Sticker ◽

Elke Kalbe

Keyword(s):

Quality Of Life ◽

Cystic Fibrosis ◽

Congenital Heart Disease ◽

Heart Disease ◽

Associated Factors ◽

Congenital Heart ◽

Negative Impact ◽

Well Being

Congenital heart disease (CHD) is a major global health problem. Until recently, the siblings of this group did not receive much attention. This review, conducted from November 2019 to October 2020, aims to summarize knowledge about psychosocial well-being and quality of life (QoL), associated factors, and interventions for siblings of children with CHD. Systematic searches were conducted in PubMed, PsycINFO, PsycARTICLES, Web of Science via EBSCOhost, and CENTRAL. Twelve articles were included. Results showed that psychosocial well-being was impaired in 14% to 40% of siblings. Negative impact of illness was highest for CHD siblings compared to siblings of children with cancer, cystic fibrosis, or diabetes. QoL was impaired in up to one-third. Siblings of children with CHD and cancer rated their QoL lower than those of siblings of children with cystic fibrosis or type-1 diabetes. Associated factors were sibling age, gender, socioeconomic status, miscarriage, previous sibling death, visibility of illness, and severity of condition. Only one of two interventions focused on siblings of CHD children. Although data are scarce and inhomogeneous, it indicates that siblings of CHD children suffer from lower psychosocial well-being and QoL than siblings of children with other chronic conditions. Interventions to improve their situation should be developed.

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