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Background <p>Chronically ill children with congenital heart diseases (CHD) have an increased risk for impairment of cognitive, language, motor and socioemotional development. These conditions may persist for years and manifest as behavioral abnormalities or academic difficulties. Clinical medical parameters and symptoms alone are not sufficient to fully assess the overall health status of these patients. Health-related quality of life (HRQoL) includes physical, psychological and social domains, providing a&#xa0;more comprehensive understanding of patient well-being; however, only a&#xa0;few standardized measurement instruments are currently available to quantify HRQoL in pediatrics.</p> Objective and methods <p>Based on the current literature from the PubMed database as well as practical clinical experience in pediatrics and psychology, this article examines how electronic patient-reported outcome measures (ePROMs) can help to systematically record health-related quality of life.</p> Results <p>Considering the numerous challenges faced by children and adolescents with CHD, it appears helpful to use conceptually comprehensive measures, such as HRQoL which capture patients’ subjective life realities beyond the medical context.</p> Conclusion <p>Incorporating an age-specific understanding into the development of measurement instruments, along with the implementation of longitudinal screening approaches, is essential to obtain a&#xa0;more accurate impression of the quality of life of children with CHD at various stages during treatment.</p>

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Elektronische Patient-Reported Outcome Measures in der Kinderkardiologie

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2025年8月9日

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  • Sophie Fuhrmeister,
  • Hannah Ferentzi,
  • Katharina R. L. Schmitt

摘要

Background

Chronically ill children with congenital heart diseases (CHD) have an increased risk for impairment of cognitive, language, motor and socioemotional development. These conditions may persist for years and manifest as behavioral abnormalities or academic difficulties. Clinical medical parameters and symptoms alone are not sufficient to fully assess the overall health status of these patients. Health-related quality of life (HRQoL) includes physical, psychological and social domains, providing a more comprehensive understanding of patient well-being; however, only a few standardized measurement instruments are currently available to quantify HRQoL in pediatrics.

Objective and methods

Based on the current literature from the PubMed database as well as practical clinical experience in pediatrics and psychology, this article examines how electronic patient-reported outcome measures (ePROMs) can help to systematically record health-related quality of life.

Results

Considering the numerous challenges faced by children and adolescents with CHD, it appears helpful to use conceptually comprehensive measures, such as HRQoL which capture patients’ subjective life realities beyond the medical context.

Conclusion

Incorporating an age-specific understanding into the development of measurement instruments, along with the implementation of longitudinal screening approaches, is essential to obtain a more accurate impression of the quality of life of children with CHD at various stages during treatment.