Long COVID could be affecting 250,000 people in Catalonia

Around 250,000 people in Catalonia could be affected by Long COVID, although the actual figure is likely to be higher. Currently, only around 14,000 cases are registered in the healthcare system, pointing to significant underdiagnosis and gaps in the follow-up of people affected. These are some of the conclusions of a new report by the Multidisciplinary Collaborative Group for the Scientific Monitoring of COVID-19 (GCMSC), an initiative led by the Barcelona Institute for Global Health (ISGlobal), a centre supported by the ”la Caixa” Foundation, and the Barcelona Medical Association (CoMB), in collaboration with the Catalan Association of Research Centres (ACER).

The report provides an overview of the current situation in Catalonia from three complementary perspectives: research, healthcare and the experiences of people affected. By bringing together these three perspectives, the document identifies some of the main challenges and proposes specific priorities to improve knowledge, care and support for people living with Long COVID.

A burden that remains difficult to quantify

Long COVID can affect multiple organs and present with a wide range of symptoms, including fatigue, cognitive difficulties or “brain fog”, problems regulating functions such as heart rate and blood pressure, and a worsening of symptoms following exercise. Its heterogeneous nature, together with the lack of specific diagnostic tools, makes the condition particularly difficult to diagnose and treat.

Data from the population-based COVICAT cohort show that approximately 23% of people infected with SARS-CoV-2 during the early stages of the pandemic developed symptoms lasting at least three months. Among those affected in 2021, 56% were still experiencing symptoms two years later.

Based on confirmed cases and the prevalence observed in the COVICAT cohort, the expert group estimates that at least 92,000 people had developed Long COVID in Catalonia by January 2021. As infections increased, this figure is estimated to have reached a minimum of 176,000 cases by July 2022, although only around 14,000 cases are registered in the healthcare system. Taking into account estimates of subsequent infections, incidence associated with the Omicron variants and the partial recovery of some people, more than 250,000 people could currently be experiencing symptoms consistent with Long COVID. The expert group warns that the available data make it possible to estimate the scale of the problem, but not to determine its current extent with precision.

“Although the risk of developing Long COVID has decreased thanks to vaccination and the emergence of Omicron, tens of thousands of people continue to live with its consequences. The significant gap between estimated and registered cases shows that much remains to be done to improve diagnosis and follow-up”, says Lourdes Mateu, head of the Foundation’s Emerging Respiratory Infections research line and the Long COVID programme at Germans Trias i Pujol University Hospital, and co-author of the report.

Limited care and fragmented research

The report identifies significant shortcomings in both research and healthcare. In Spain, research into Long COVID has largely depended on general competitive funding calls or European funding, rather than having a dedicated national programme as in the United States or Germany. This limits the ability to establish large cohorts, conduct long-term follow-up and carry out clinical trials.

Access to specialised care is also limited. According to the report, Catalonia currently has only one multidisciplinary Long COVID unit, at Germans Trias i Pujol University Hospital in Badalona. Other specialist services established during the early stages of the pandemic have ceased operating, while some successful local models have not been extended to other areas. This situation contributes to geographical inequalities in access to care.

Beyond the health consequences

The report also incorporates the experiences of people living with the condition, through the group representing people affected by Long COVID. They highlight difficulties in obtaining recognition of the condition and appropriate care, geographical and financial barriers, difficulties in remaining in or returning to work, and challenges in accessing disability recognition and social protection. They also emphasise the psychological impact of prolonged uncertainty and the lack of recognition of their symptoms.

Since the early stages of the pandemic, organisations representing people affected have played an important role in supporting those living with the condition, helping to define research priorities, recruiting participants for studies, disseminating scientific findings and engaging in dialogue with healthcare professionals and policymakers. “For many people, Long COVID affects their ability to work, care for their families and participate in everyday life. Therefore, appropriate social and workplace support must also form part of the response”, says Silvia Soler, a representative of the group and co-author of the report.

Setting priorities for action

The report proposes specific measures that can begin to be implemented now, including strengthening research and the identification of biomarkers; improving diagnosis, registration and follow-up in primary care; and facilitating disability recognition and workplace adjustments for people affected.

“It is clear that the challenges in research, healthcare and social support are closely interconnected. The aim of this report is not only to describe existing shortcomings, but also to identify realistic priorities that can help improve the response to Long COVID in Catalonia”, says Silvia de Sanjosé, ISGlobal researcher and coordinator of the GCMSC.