Long COVID: Study reveals high prevalence of symptoms and invisibility in healthcare services

A study by the National School of Public Health (Ensp/Fiocruz), carried out in partnership with the Harvard T. H. Chan School of Public Health) and the London School of Economics and Political Science, revealed a high rate of self-reported long COVID in the city of Rio de Janeiro, as well as a high prevalence of symptoms associated with the post-COVID syndrome, such as fatigue, joint pain and cognitive impairment. The data also shows that, contradictorily, the syndrome remains invisible in the healthcare services, blending in with other demands that arise, indicating that patients are unable to get the care they need and that the healthcare services are not prepared to look after them. The research also pointed out that, despite the high cost of long COVID for individuals, families and society, awareness and understanding of the condition are very low.

The research Cuidado de saúde à Covid longa: necessidades, barreiras e oportunidades no município do Rio de Janeiro (Long COVID healthcare: needs, barriers and opportunities in Rio de Janeiro) aimed to build evidence to strengthen care for post-COVID syndrome in the SUS (Unified Health System). To this end, the study assessed the prevalence of post-COVID symptoms, as well as the needs and use of healthcare services. It also sought to identify care flows, barriers and opportunities for long COVID healthcare, as well as understanding the health, social and financial impacts of living with the syndrome. The data was collected between November 2022 and April 2024.

Also known as long COVID, post-COVID syndrome is an infection-associated chronic illness (IACI), which can develop after a SARS-CoV-2 infection and can last from three months to years. Post-COVID syndrome involves between one and several symptoms, which can vary over time. Patients can also suffer organ damage.

"The project, involving mixed methods, was an international, interdisciplinary initiative with patient engagement, aimed at estimating the prevalence of long COVID, from a probabilistic sample of patients who were hospitalized for COVID-19 in SUS hospitals in the city of Rio de Janeiro. In particular, the study sought to identify the needs, use and barriers to accessing healthcare services. In the quantitative component of the study, we carried out 651 interviews with hospitalized patients during the acute phase of the disease or, in some cases of death or difficulty for patients to participate directly, with their representatives. The qualitative component, in turn, included 29 interviews with healthcare professionals and managers in the network, as well as 31 interviews about the experience of patients living with long COVID, regardless of previous hospitalization," states Margareth Portela, a researcher at ENSP and coordinator of the project in Brazil.

Letícia Soares, a member of the Patient-Led Research Collaborative and a patient-researcher in the study, points out that the inclusion of people with lived experience of the disease in research is crucial for researchers to better understand the impacts of the disease and define more effective ways of studying them: "This makes research more efficient and accurate, further contributing to the development of more transformative solutions for patients."

High prevalence of symptoms

The research results showed a high prevalence of post-COVID symptoms: 91.1% of respondents reported at least one symptom, and 71.3% said they experienced at least one frequent symptom. Of all those interviewed, 39.3% self-reported post-COVID syndrome, but only 8.3% had a long COVID diagnosis from a healthcare professional. A high mortality rate (12%) was also seen between the patient's discharge and their recruitment for the study up to two years later.

The five most common post-COVID symptoms were: fatigue, post-exertional malaise (worsening or onset of symptoms 24 to 72 hours after physical or cognitive exertion), joint pain, sleep disorders and cognitive impairment. Numbness, anxiety and depression were also reported as highly prevalent symptoms (developed in more than 25% of those interviewed).

High prevalence of need for healthcare services

The research revealed that approximately 50% of participants reported needing healthcare services for conditions that appeared or worsened after COVID-19 in the six months prior to the interview.

The most needed services among participants who reported needing healthcare were: specialized medical care, pharmacy, outpatient primary care and laboratory services. "The need for specialized medical care and hospitalization/emergency care, in particular, was associated with self-reported post-COVID syndrome," the researchers note.

In the analysis of specific healthcare services, the results showed a high level of use among those interviewed who reported needing primary health care (89.2%) and emergency hospital care (95.8%), most often through the SUS (95%). Although specialized medical care was used by 81.7% of participants who reported needing it, more than half (55.3%) used private providers.

Difficulties in accessing care

As the results showed, almost half of the people who reported needing a post-COVID clinic or rehabilitation service did not have access to them (47.7%), and many were unaware of the existence of post-COVID clinics in the city of Rio de Janeiro.

There was also a high percentage of interviewees who reported needing mental health care, but were unable to use the service (43.1%). When accessed, mental health care was mainly provided by private providers (70.9%).

Several factors were found to obstruct access to care for post-COVID syndrome in primary and specialized care. These include increasing social inequality and its impact on the SUS; overloading the health system; the lack of a clear protocol for diagnosis and referral; and the desire of healthcare professionals, heavily impacted by the pandemic, to move on from COVID. Other challenges observed were inadequate data collection and surveillance; professionals' lack of knowledge about the post-COVID syndrome; and general flaws in the referral system.

The results also pointed out that some of these factors also prevented the provision of post-COVID care for patients with successful access to primary and/or specialized care. "Without training or a clear protocol for the treatment and management of post-COVID syndrome, doctors were ill-equipped to provide effective care. For patients followed up in specialized care, communication problems between the services made coordination of care by the primary care team almost impossible. Moreover, neither managers nor frontline professionals were aware of the technical notes issued by the Ministry of Health since the end of 2021," the researchers say.

Bárbara Caldas, a researcher on the study and a postdoctoral student at ENSP, says that they found limited knowledge among healthcare professionals about the symptoms of COVID-19 and misconceptions, such as disbelief about the actual existence of the syndrome and a tendency to classify the symptoms brought by patients as psychological. "That is why we emphasize that more training, education, and continuous education can help raise awareness among healthcare teams on how to identify and care for patients with long COVID," she advocates.

Radical change in life

The findings revealed that post-COVID syndrome has caused a radical change in the lives of people living with the condition.

Among the negative impacts, the following were observed: the inability to work or the need to reduce working hours, with rare access to formal benefits/medical leave; the inability to carry out activities of daily living; and the inability to access the necessary care through the SUS, with frequent spending of reduced income on private services and medications.

Given the worrying results, the authors of the study advocate strengthening care for post-COVID syndrome in the SUS. "Preparing the health system to identify and care for patients with long COVID would bring wider benefits, including for other neglected IACIs" they conclude.

Public health care to tackle social inequalities

According to the authors of the study, long COVID is estimated to affect millions of Brazilians, with a disproportionate impact on marginalized populations who already face difficulties in accessing quality health care. For this reason, they argue that public health care for post-COVID syndrome is essential for tackling socio-economic and health inequalities: "Without proper care, patients' health will get worse. They may not be able to work to support themselves or their families, which in turn can increase the difficulty of getting the care they need."

As the study's researcher Emma-Louise Aveling, from Harvard University, explains, long COVID is, in a way, 'new', if analyzed as a condition that emerged recently, during the COVID-19 pandemic. However, when important aspects are considered, it can be seen that the post-COVID syndrome is not new. "In fact, there are several Infection-associated Chronic Illnesses (CCAIs) triggered by endemic diseases in Brazil. Another factor that is also not new, tragically, is the history of erasure and invisibilization of people living with the disease and the injustices and harm to their right to a dignified quality of life."

Emma-Louise argues that, while some challenges are specific to the Brazilian health system, some solutions to ensure equitable and quality care for long COVID can and should be shared globally: "These global needs call for renewed collaborative efforts in favor of health equity on an international and national scale."