Have Patients' Perceptions and Priorities Changed after 1 Year of Corona Pandemic in Germany? A Nationwide Analysis of Qualitative Responses

Background: Patients with congenital heart disease (CHD) and their families are already affected in their daily lives by the often severe congenital disease. With the outbreak of the Corona pandemic in early 2020, CHD patients were confronted with a new threat of a global pandemic that was completely unknown to people in Europe, but especially in Germany. To gain a more detailed insight into the problems of such an exceptional situation, two nationwide online surveys were conducted to shed light on the situation of CHD patients to be better prepared in future comparable situations.

Methods: Survey I (from the second quarter of 2020) and survey II (from the second quarter of 2021) were conducted online by the German National Register for Congenital Heart Defects (NRCHD). Study participants were invited to participate via email. A total of 3,558 patients (53% female) in survey I and a total of 3,179 patients (52.6% female) in survey II were included in the statistical analyses.

Results: Survey I: 565 (15.9%) provided additional qualitative information (56.8% female). Insufficient information about Corona in relation to CHD was reported most frequently (30.4%), worries (24.1%) were mentioned second most frequently, and explicitly expressed fears related to Corona (23.2%) landed in third place. Survey II: 615 (19.3%) reported additional qualitative information (51.4% female). Insufficient information about Corona in relation to CHD was reported most frequently (26%), vaccinations (24.1%) were the second most frequent topic, and the prioritization of CHD patients in everyday (medical) life during the Corona pandemic (23.4%), often perceived as insufficient, ranked third.

Conclusion: While concerns and fears were most frequently mentioned in Survey I at the beginning of the Corona pandemic, this changed with respect to protective measures and the way the health care system and society dealt with particularly vulnerable patients (inadequately perceived prioritization of patients with CHD). Clear plans, rules, and explanations should be a central component of future pandemic response. In this context, the provision and clear communication of protective options for particularly vulnerable individuals, such as the chronically ill, seems to need further development to increase patient safety and maintain compliance.

Publication History

Article published online:
13 February 2024