"Ultimately, you are on your own." A qualitative analysis of barriers to health care from the perspective of patients with long COVID

Abstract

BACKGROUND: About 5% of the population are affected by post-infectious symptoms after a Sars-CoV-2-infection. Long COVID or a post-COVID-19 condition can affect all organ systems and lead to a complete need for care. 10-50% of patients meet the diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome. Treatment recommendations have so far been limited to stress management and symptomatic, psychological or activity-enhancing measures (physical or exercise therapy). Initial studies of patients' perspectives indicate that both the recognition of the disease and the medical care for affected patients are insufficient. METHOD: Since June 2023, patients with long COVID or their relatives have been able to report medical and social care experiences by telephone or using an online reporting form from the Techniker (TK) Health Insurance fund and the German Society for Patient Safety as part of a project funded by the German Federal Ministry of Health. From 1,216 reports received by December 2023, 264 representative cases were selected and evaluated using structuring and summarizing content analysis. The aim was to understand the experiences of those affected with barriers to health and social care and their consequences. RESULTS: In the fourth year after the start of the pandemic, there is a lack of care structures and competence on the part of all care service providers, according to those affected. Special outpatient clinics for post-viral syndromes are either not accessible for the majority of participants or do not accept new patients or have waiting times of up to two years. Aside from the fact that there are currently no causally effective treatments for post-viral syndromes, 85% of those surveyed report that medical or social contacts are not sufficiently informed about the clinical picture. 80% of participants report that their symptoms are not acknowledged by employees in the health and social care sector, or they are considered a psychological issue. As a result, patients receive no or incorrect treatment and/or do not receive appropriate social care. 56% report a deterioration in their health status caused by prescribed or recommended examinations or treatments. The psychologization of post-viral symptoms is described as stigmatizing and considered the main cause of the precarious care situation of those affected by long COVID. DISCUSSION: The study shows that there are currently no adequate care concepts and structures for post-infectious illnesses and that activating therapies, mostly in connection with the assumption of a psychosomatic origin, lead to significant malpractice. The finding that the majority of respondents feel weakened, ashamed or harmed by their physicians is particularly dramatic. The data also provide evidence of systematic stigmatization and discrimination against those affected. The generalizability of the results is limited. CONCLUSIONS: To ensure adequate medical and social care for patients with long COVID, rapid training and further education of all those involved, the development and expansion of specific care offerings as well as a monitoring of health care provision are urgently needed.