Care disruptions fueled pandemic stress for patients in China

Treatment disruptions during the height of the COVID-19 pandemic were a substantial driver of psychological distress for people with hemophilia in China, causing more stress than the virus itself, a study found.

The researchers said the findings underscore the importance of reliable access to treatments, especially self-administered ones, to help people with hemophilia thrive during states of emergency.

The study, “Treatment disruption and psychological distress among hemophilia patients during the COVID-19 pandemic: the role of healthcare accessibility,” was published in BMC Public Health.

Hemophilia is characterized by defects in clotting proteins, resulting in hemophilia symptoms such as abnormally easy and prolonged bleeding. Hemophilia treatments are available to help prevent and manage bleeds — but for patients to benefit, they need reliable access to these treatments.

The COVID-19 pandemic had a profound effect on society — not only due to the virus itself, but also because of government actions to control its spread. For many people with hemophilia and other conditions that require long-term medical care, pandemic-related disruptions caused problems accessing needed treatments.

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In China, strict zero-COVID policies were implemented in early 2020 and not lifted until the end of 2022. In this study, researchers wanted to understand how the pandemic and related policies affected hemophilia patients in China.

The scientists conducted a survey of hemophilia patients aged 12 and older receiving care at the Hemophilia Diagnosis and Treatment Center in Fujian Province. The survey included questions about medical history, demographics, and pandemic experience, along with a standardized, ten-question measure of psychological distress called the Kessler Psychological Distress Scale (K10).

The survey was completed by more than 200 people: 45 adolescents and 163 adults. More than a third (38.5%) of these patients reported psychological distress as measured by the K10.

The researchers used statistical analyses to identify factors significantly associated with psychological distress. Results showed that patients who experienced disruptions to hemophilia treatment were significantly more likely to report psychological distress.

Other factors were not significantly associated with psychological distress. These included age, disease severity and hemophilia type, as well as whether the individual had ever been infected with SARS-CoV-2 (the virus that causes COVID-19). Bleeding episodes were also not associated with distress.

In additional analyses, the researchers noted that patients who experienced COVID-related treatment disruptions were significantly less likely to self-inject their hemophilia treatments. Patients with treatment disruptions were also more likely to face restrictions in accessing treatment. Again, however, SARS-CoV-2 infection did not have a statistically significant effect — meaning the virus itself was not a major driver of treatment disruptions or the psychological distress they can cause.

The findings suggest that providing patients with reliable access to treatments, along with the tools and training to administer them independently, may help people with hemophilia better cope with emergencies, the researchers said.

“Our findings highlight that treatment disruption—driven largely by medication inaccessibility and limited self-injection skills—is the primary modifiable factor associated with psychological distress in hemophilia patients during public health crises,” they wrote. “These results suggest that targeted interventions, including structured self-injection training programs and the establishment of priority medication supply channels, may be associated with reduced psychological morbidity in this vulnerable population during future emergencies.”

The researchers noted that the study was limited to patients at one center and that the survey was conducted in early 2023, after pandemic-related restrictions had ended.