Predictors of health-related quality of life in children with chronic heart disease

Abstract

Beyond medical treatment, integration into school is important to increase health-related quality of life in children and adolescents surviving with chronic heart disease. Regular screening of health-related quality of life is recommended to identify patients with special needs.

Translation and adaptation of the Pediatric Cardiac Quality of Life Inventory to the Portuguese population

“…In short, this study revealed high levels of quality of life in children and adolescents with CHD, which is consistent with the predominance of simple CHD in this sample. These results are in line with those of Ernst et al (2018) and Niemitz et al (2017) who found that patients with severe heart disease and greater need for medical care have worse quality of life. The 5-month data collection period proved insufficient to develop the validation process, as mentioned above.…”

“…The perception of quality of life varies from person to person, across families. For this reason, it is important to assess the personal perspective of each child or adolescent and their parents (Marino, Cassedy, Drotar, & Wray, 2016;Niemitz et al, 2017). The analysis of the characteristics of the quality of life of children/adolescents with CHD is of undeniable interest because it will allow identifying the impact of the disease and/ or treatments and better understanding patients, their evolution, and adaptation to the disease.…”

“…In the last decades, several factors have contributed to significantly reduce the morbidity and mortality rates of children with heart disease. Simultaneously, there was an increase in the life expectancy of this population with significant disease-related physical, psychosocial, and neurodevelopmental comorbidities which have an impact on their quality of life (Marino et al, 2012;Niemitz et al, 2017). Chronic diseases are becoming increasingly common in child health.…”

“…These views will contribute to developing a care plan directed at/focused on the needs of children and families, prioritizing problems, facilitating communication, detecting potential problems, identifying preferences, and monitoring the patient's evolution and response to treatment. In clinical practice, the integration of different points of view improves quality of life assessment; the perceptions of children/adolescents and their parents should complement each other (Niemitz et al, 2017). At an initial stage of this study, a literature review revealed the opinion of several authors about the key characteristics of a quality of life assessment tool.…”

Psychomotorische und kognitive Entwicklung und Lebensqualität bei Kindern und Jugendlichen mit angeborenem Herzfehler

“…Bei herzkranken Kindern, Jugendlichen und Erwachsenen sind die funktionellen Aspekte der körperlichen Funktionsfähigkeit, der psychomotorischen Entwicklung, des psychischen Befindens und der sozialen Funktionsfähigkeit die maßgeblichen Schlüsselfaktoren für die QoL [44,52]. So wurde über alle Altersgruppen eine Korrelation zwischen reduzierter QoL und Schwere der Herzerkrankung, Komplexität und Häufigkeit medizinischer Maßnahmen, aber auch reduziertem Selbst-wertgefühl und vermehrten Verhaltens-und emotionalen Problemen einschließlich Fehlzeiten in der Schule gefunden [52,64]. Exekutive Dysfunktionen, soziale Wahrnehmungsstörungen, reduzierte schulische Leistungen und internalisierende Störungen wie Depression oder Angst sind signifikant mit verminderter QoL assoziiert [44].…”