COVID-19 Pandemic Shifts Concerns of Congenital Heart Defect Patients and Relatives

Strategic Insights -

During the Coronavirus Disease 2019 (COVID-19) pandemic, the concerns of congenital heart defect patients and their relatives evolved significantly, with a shift from fear and uncertainty to vaccination-related concerns. A nationwide online survey conducted by the German National Register for Congenital Heart Defects (NRCHD) in April 2020 and April 2021 found that concerns related to general COVID-19 information, lack of CHD-specific information, worry, fear, isolation, and uncertainty dominated the responses in 2020. However, by 2021, concerns shifted toward vaccination and vaccination prioritization, while information gaps and fear persisted.

Key Takeaways:

  • A nationwide online survey of congenital heart defect patients and their relatives in Germany found that concerns shifted from fear and uncertainty to vaccination-related concerns during the COVID-19 pandemic.
  • In 2020, dominant themes included general COVID-19 information (37.3%), lack of CHD-specific information (30.4%), worry (24.1%), fear (23.2%), isolation (21.4%), and uncertainty (21.2%).
  • By 2021, concerns shifted toward vaccination (24.1%) and vaccination prioritization (23.4%), while information gaps (21.8%) and fear (21.0%) persisted.
  • The research concluded that clear CHD-specific communication, caregiver-inclusive psychosocial support, and crisis-resilient care pathways (including telemedicine) are essential for this vulnerable population.
  • The Deutsche Herzstiftung e.V and Federal Ministry of Education and Research were the funders of this research.
  • The German National Register for Congenital Heart Defects (NRCHD) conducted two nationwide online surveys in April 2020 (Survey 1) and April 2021 (Survey 2).
  • Free-text responses were analyzed using Mayring's summarizing content analysis, and categories were coded per respondent (present/absent) for exploratory comparisons by year, role, sex, and CHD complexity.

Statistics:

  • 15.9% of respondents in Survey 1 and 19.3% in Survey 2 provided qualitative information.
  • General COVID-19 information decreased by 12.1% from 2020 to 2021.
  • Lack of CHD-specific information increased by 8.4% from 2020 to 2021.
  • Fear decreased by 1.6% from 2020 to 2021.
  • Isolation decreased by 4.5% from 2020 to 2021.
  • Uncertainty decreased by 5.2% from 2020 to 2021.
  • Vaccination concerns increased by 6.8% from 2020 to 2021.
  • Vaccination prioritization concerns increased by 6.8% from 2020 to 2021.

Sources:

  • NewsRx. Research Results from Department of Congenital Heart Disease-Pediatric Cardiology Update Knowledge of COVID-19 (From Fear to Vaccination: Changing Needs of Congenital Heart Defect Patients and Relatives over the Course of the COVID-19 Pandemic). Cardiovascular Week. October 27, 2025; p 180.
  • From Fear to Vaccination: Changing Needs of Congenital Heart Defect Patients and Relatives over the Course of the COVID-19 Pandemic. Journal of Clinical Medicine, 2025;14(19):7005.