Abstract

Long COVID is characterized by symptoms that persist for more than 12 weeks after a SARS-CoV-2 infection. This study investigated public perceptions of long COVID in Brazil. Interviews were conducted with 1,295 participants selected based on variable quotas, according to the population distribution in each region of the country, using data from the 2021 National Household Sample Survey (PNAD) and the 2010 IBGE Census. The findings revealed that 40.6% reported having had COVID-19 between 2020 and 2023, with 33.4% experiencing persistent symptoms for at least three months. The most common symptoms included fatigue (44.6%), headache (43.7%), hair loss (40.9%), memory loss (34.7%), and difficulty concentrating (28.7%). The study highlights that Brazilians are unaware of the correlation between these symptoms and the acute phase of the disease. By increasing public awareness of the issue, society becomes more capable of demanding better healthcare services for long COVID and insisting on effective policies. The importance of social education on this topic is fundamental to improving the healthcare system.

Key words:
Long COVID; Public perception; COVID-19; Persistent symptoms; Public health

Resumo

A COVID longa é caracterizada por sintomas que persistem por mais de 12 semanas após uma infecção por SARS-CoV-2. No entanto, ainda há falta de conscientização sobre o tema. Este estudo de pesquisa investigou as percepções públicas sobre a COVID longa no Brasil, com foco na diversidade de sintomas percebidos após a fase aguda da COVID-19. Foram realizadas entrevistas com 1.295 participantes selecionados por quotas variáveis, de acordo com a distribuição populacional do país em cada região, com proporções definidas por dados da Pesquisa Nacional por Amostra de Domicílios (PNAD) de 2021 e do Censo IBGE de 2010, as quais revelaram que 40,6% relataram ter tido COVID-19 entre 2020 e 2023, sendo que 33,4% apresentaram sintomas por pelo menos três meses após a infecção. Os sintomas mais comuns incluíram fadiga (44,6%), dor de cabeça (43,7%), queda de cabelo (40,9%), perda de memória (34,7%) e dificuldade de concentração (28,7%). O estudo destaca que, embora os brasileiros tenham vivenciado os possíveis sintomas a longo prazo, eles desconhecem os detalhes da condição. Assim, ao aumentar a percepção pública sobre o tema, a sociedade se torna apta a cobrar das autoridades públicas de todas as esferas de poder, exigindo um melhor atendimento direcionado à COVID longa, insistindo em políticas públicas eficazes. A importância da educação social sobre o tema, portanto, é a base para um sistema de saúde melhor voltado ao cuidado da população.

Palavras-chave:
COVID longa; Percepção pública; COVID-19; Sintomas persistentes; Saúde pública

Resumen

La COVID prolongada se caracteriza por síntomas que persisten durante más de 12 semanas tras una infección por SARS-CoV-2. Este estudio investigó las percepciones públicas sobre la COVID prolongada en Brasil. Se realizaron entrevistas con 1.295 participantes seleccionados por cuotas variables, según la distribución poblacional del país en cada región, con proporciones definidas por datos de la Encuesta Nacional por Muestra de Hogares (PNAD) de 2021 y del Censo IBGE de 2010, que revelaron que el 40,6% reportó haber tenido COVID-19 entre 2020 y 2023, y el 33,4% presentó síntomas durante al menos tres meses después de la infección. Los síntomas más comunes incluyeron fatiga (44,6%), dolor de cabeza (43,7%), caída del cabello (40,9%), pérdida de memoria (34,7%) y dificultad para concentrarse (28,7%). El estudio destaca que aunque los brasileños han experimentado posibles síntomas a largo plazo, desconocen los detalles de la condición. De esta manera, al aumentar la conciencia pública sobre el tema, la sociedad se vuelve capaz de exigir cuentas a las autoridades públicas en todos los niveles de poder, exigiendo una mejor atención para la COVID prolongada e insistiendo en políticas públicas efectivas. La importancia de la educación social en el tema es la base para un sistema de salud mejor enfocado a la atención de la población.

Palabras clave:
COVID prolongado; Percepción pública; COVID-19; Síntomas persistentes; Salud pública

Introduction

According to the recent World Health Organization (WHO) definition, long COVID is defined as the onset or persistence of a variety of symptoms occurring for more than 12 weeks after acute SARS-CoV-2 infection, without an alternative diagnosis. This condition is characterized primarily by many reported symptoms such as fatigue, dyspnea, and neurological and cognitive impairment and affects multiple organs and systems¹1 Mantovani A, Morrone MC, Patrono C, Santoro MG, Schiaffino S, Remuzzi G, Bussolati G. Long Covid: where we stand and challenges ahead. Cell Death Differ 2022; 29(10):1891-1900.. The etiology of long COVID is still poorly understood; hence, treatments focus only on symptom relief. Furthermore, the consequences of this syndrome are still unknown, as is the epidemiology of long COVID, which remains debated in the scientific community and among policy makers²2 Global Burden of Disease Long COVID Collaborators. Estimated Global Proportions of Individuals with Persistent Fatigue, Cognitive, and Respiratory Symptom Clusters Following Symptomatic COVID-19 in 2020 and 2021. JAMA 2022; 328(16):1604-1615..

Multiple hypotheses regarding the pathophysiology of long COVID, including virus persistence in tissues, host mitochondrial dysfunction, immune system dysregulation, persistent vascular injuries, preexisting comorbidities, and the clinical evolution of acute infection, have emerged and have recently been described in the literature³3 Davis HE, McCorkell L, Vogel JM, Topol EJ. Author Correction: Long COVID: major findings, mechanisms and recommendations. Nat Rev Microbiol 2023; 21(6):408. Erratum for: Nat Rev Microbiol 21(3):133-146.. However, the pathophysiology of long COVID remains an unanswered question in the academic world.

The delineation of this syndrome is complex, and epidemiological studies and clinical trials aiming to better understand it face substantial challenges. This complexity stems from the diversity of symptomatic manifestations among affected individuals, which hinders the development of an effective therapeutic approach and specific guidelines to guide clinical management. Nevertheless, the most frequently reported symptoms of long COVID include fatigue, dyspnea, altered senses of smell and taste, cognitive impairments such as memory loss and insomnia, and systemic impairments across multiple organs⁴4 Centers for Disease Control and Prevention (CDC). Post-COVID Conditions: Information for Healthcare Providers [Internet]. 2020 [cited 2023 jun 10]. Available from: https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-care/post-covid-conditions.html.
https://www.cdc.gov/coronavirus/2019-nco... ^,55 Ford ND, Slaughter D, Edwards D, Dalton A, Perrine C, Vahratian A, Saydah S. Long COVID and Significant Activity Limitation Among Adults, by Age - United States, June 1-13, 2022, to June 7-19, 2023. MMWR Morb Mortal Wkly Rep 2023; 72(32):866-870.. Studies have shown that even mild COVID-19 infections can lead to what is known as “brain fog”, which includes memory lapses and issues with executive functions. These impairments have persisted for up to 7 months post-infection, directly affecting patients’ quality of life and work performance⁶6 Lopes-Santos LE, Ferreira DL, Angelis G, Foss MP, Trevisan AC, Lacerda KJCC, Tumas V, Bellissimo-Rodrigues F, Wichert-Ana L. How Mild Is the Mild Long COVID? A Comprehensive Neuropsychological Assessment of Patients with Cognitive Complaints. Arch Clin Neuropsychol 2025; 40(2):302-309..

Recent studies have shown that among survivors of the acute phase of the pandemic between 2020 and 2021, 6.2% reported experiencing at least one long COVID symptom three months after acute infection. A recent study conducted in Brazil⁷7 Bonifácio LP, Csizmar VNF, Barbosa-Júnior F, Pereira APS, Koenigkam-Santos M, Wada DT, Gaspar GG, Carvalho FS, Bollela VR, Santana RC, Souza JP, Bellissimo-Rodrigues F. Long-Term Symptoms among COVID-19 Survivors in Prospective Cohort Study, Brazil. Emerg Infect Dis 2022; 28(3):730-733. indicated that 80% of the sample experienced persistent symptoms from the acute phase of COVID-19, with most patients reporting more than one symptom for at least 120 days after the acute phase. Unfortunately, it is estimated that up to 20% of SARS-CoV-2 patients in the world experienced persistent symptoms after the acute phase of the infection, underscoring the importance of understanding the underlying factors of this prolonged symptomatology and appropriately guiding ongoing medical care⁸8 Regunath H, Goldstein NM, Guntur VP. Long COVID: Where Are We in 2023? Mo Med 2023; 120(2):102-105..

Some studies have reported strong correlations between the persistence of symptoms after the acute phase of the disease with groups that are more adversely affected during the initial phase, such as elderly individuals or those with preexisting conditions such as hypertension, diabetes, or heart disease. On the other hand, the long-term symptoms of COVID-19 also appear in patients whose acute disease phase is characterized as mild or asymptomatic across all age groups and even in the absence of preexisting conditions⁹9 World Health Organization (WHO). Post-COVID-19 condition. Geneva: WHO; 2023 [cited 2024 mar 18]. Available at: https://www.who.int/europe/news-room/fact-sheets/item/post-covid-19-condition..

A prospective study conducted in Brazil in 2023 analyzed the prevalence of factors associated with Long COVID, highlighting that three out of four adult participants continued to experience long-term symptoms from the acute phase. The study strongly associated this condition with being female, a sedentary lifestyle, and found an inverse relationship between COVID-19 vaccination and the prevalence of Long COVID¹⁰10 Feter N, Caputo EL, Leite JS, Delpino FM, Silva LS, Vieira YP, Paz IA, Rocha JQS, Silva CN, Schröeder N, Silva MC, Rombaldi AJ. Prevalência e fatores associados à COVID longa em adultos do Sul do Brasil: achados da coorte PAMPA. Cad Saude Publica 2023; 39(12):e00098023..

Unfortunately, little is being talked about the effects of long COVID in the population and there are only a few countries establishing public policies to combat the long-term symptoms of COVID-19. In addition, public perception of population might be evaluated to understand if there is a clear awareness about the risks of long COVID and how much it affects the lives of millions of people around the world. Furthermore, it is necessary to know what the gaps among the medical doctors and the understanding of the effects of long COVID are.

Brazil was strongly affected by COVID-19 and the pandemics have made more than 700.000 deaths, 250.000 people hospitalized and 39 million people infected¹¹11 Ranzani OT, Bastos LSL, Gelli JGM, Marchesi JF, Baião F, Hamacher S, Bozza FA. Characterisation of the first 250 000 hospital admissions for COVID-19 in Brazil: a retrospective analysis of nationwide data. Lancet Respir Med 2021; 9(4):407-418.. There are few studies on epidemiology of the long-term symptoms of long COVID in Brazil and few studies are being conducted now using retrospective data analyzes and artificial intelligence (AI).

When searches concerning participants perception of long COVID are conducted in databases such as the PubMed, EMBASE, and Latin American and Caribbean Health Sciences Literature (LILACS) databases, the results are always the same: there are no studies on the public’s knowledge about the long-term symptoms after the acute phase of COVID-19. Therefore, given the current lack of comprehensive studies on this in the literature as well as in relation to the public perception of this health condition, this study aimed to estimate and analyze the public perception of post-COVID long-term symptoms in the Brazilian adult population. For this purpose, a national opinion survey was conducted and data were compiled among people who reported infection by COVID-19 and the post-COVID symptoms after the acute phase of infection. This perception was evaluated in the light of recent studies showing that characteristic symptoms of long COVID and brings several worries to the health system and the need to the rehabilitation.

Methods

A quantitative sample study was conducted, consisting of a public opinion survey carried out from July 5^th to July 10^th, 2023, by the SoU_Ciência Study Center and the Idea Institute. The survey was conducted using a structured questionnaire with 53 questions, targeting a representative sample of the Brazilian population, comprising 1,295 respondents of both sexes, residing throughout the country, aged 16 and older, with diverse demographic characteristics.

The sample was organized by variable quotas in line with the country’s population distribution across each region, with proportions defined by data from the 2021 PNAD survey and the 2010 IBGE Census. Respondents were segmented by demographic characteristics (gender, age, ethnicity, region, education, social class, income, religion, municipality, and political orientation). A national sample of 1,250 to 1,300 interviews, with a 95% confidence interval, has a margin of sampling error of plus or minus 2.85 to 3 percentage points. Public opinion samples for national elections, for example, are composed on a similar scale. At the beginning of the questionnaire, we ask whether the participant consents to take part in the study. Both the control of inconsistencies and the breakdown of sociodemographic data are conducted daily throughout the data collection period.

All the selected participants stated that they had been previously diagnosed (between 2020 and 2023) with COVID-19, accounting for 40.6% of the initial sample. 661 (51%) participants reported not having been diagnosed with the disease, and 108 (8.3%) stated that they did not know whether they had the disease; therefore, these participants were excluded from the next step analysis of the results.

The results obtained were analyzed categorically, considering such variables. The quantitative questions allowed only one response, whereas the qualitative questions allowed more than one response. The study was based on self-reported data, which may be subject to errors in memory or interpretation.

Participation in the survey was voluntary, and no financial incentives were offered to the participants. The project was conducted following Brazilian ethical norms for studies involving human subjects (Resolution CNS 466/2012) and was registered with the Ethics and Research Committee (CEP/UNIFESP) under number 1309/2021.

Results

Between July 5^th and 10^th, 2023, 1295 individuals were interviewed via telephone to complete a questionnaire. From this pool, 526 participants reported to have had COVID-19 and then were considered for this study. This included 302 women (57.4%) and 224 men (42.6%). Among the participants, 240 (45.7%) were aged 45 years or older, 126 (24%) were between 35 and 44 years old, 107 (20.3%) were between 25 and 34 years old, and 57 (10%) were between 18 and 24 years old. Concerning the region of residence, 197 (37%) participants were residents of the Southeast Region; the percentages for the Northeast, South, North, and Midwest Regions were 28.9% (152 respondents), 12.6% (66), 12.3% (67), and 9.2% (48), respectively. The subjects answered several questions related to the COVID-19, the symptoms reported and the duration of them after the infection. Questions on the number of infections were also included. Table 1 shows the main persistent symptoms reported by the participants after COVID-19 and which might be related to the long COVID.

Regarding the need for hospitalization in the acute phase of the infection, 41 (7.8%) participants who were diagnosed with COVID-19 required hospitalization, while 341 (64.8%) sought outpatient medical care, and the remaining 138 (26.3%) abstained from seeking medical help during the infection. Additionally, questions were asked regarding the persistence of symptoms for more than 12 weeks and/or the appearance of symptoms perceived by the individual. A total of 52.5% (276 individuals) of the participants reported that they experienced mild symptoms, 40.4% (212) reported experiencing moderate symptoms, and only 33 (6.2%) reported experiencing severe symptoms (Figure 1). Among the 526 study participants who have contracted COVID-19, 66% (348) reported to have been infected only once; 25% (131) were infected twice; 7.5% (39) were infected at least three times, and 1% (5) did not remember, indicating a reinfection rate of approximately 32.5% among patients with a history of COVID-19 (Figure 2).

All responses in this topic were considered regardless of the time of symptom onset after the acute phase, and this interval was distributed among participants as follows: Regarding the temporality of the clinical picture, 176 (33.4%) participants reported having symptom onset and/or persistence for at least three months, as follows: 52 (30%) participants stated that their symptoms persisted for two weeks after the end of the acute infection, followed by 35 (19.9%) who reported a duration of four weeks, 15 (8.5%) with a duration of two months, 9 (5.4%) with a duration of three months, 5 (2.8%) with a duration of four months, 2 (0.9%) with a duration of five months, 5 (2.7%) with a duration of six months, and 38 (21.6%) with a duration of more than 6 months (Figure 3).

Discussion

The study presents some important limitations, mainly due to the methodology of telephone interviews. Among the limitations are information bias from participants and selection bias, as only individuals with access to telephones who were available to respond to the survey were included. Additionally, it is not possible to objectively verify the information provided, as the questions relied on the participants’ perception and memory without considering positive tests or medical records. We do not know the interval until the symptoms were investigated, only the perception of how long after the acute phase the symptoms persisted or appeared.

Proceeding with the analysis of the previously documented data obtained through the research conducted by the SoU_Ciência Center¹²12 Veras-Fiorentino P, Araújo VO, Zatti H, Luis CV, Cavalcanti CRS, de Oliveira MHC, Leão AHFF, Bertoldo Junior J, Barbosa GGC, Ravera E, Cebukin A, David RB, de Melo DBV, Machado TM, Bellei NCJ, Boaventura V, Barral-Netto M, Smaili SS. Natural Language Processing method to Unravel Long COVID's clinical condition in hospitalized patients. Cell Death Dis 2024; 15(9):671., it is possible to establish congruence between the literature and the responses provided by the participants in the present study. It is important to note that according to the WHO, long COVID is defined as the persistence or emergence of symptoms for at least three months after COVID-19 with a duration of at least two months without any other explanations or diagnoses⁹9 World Health Organization (WHO). Post-COVID-19 condition. Geneva: WHO; 2023 [cited 2024 mar 18]. Available at: https://www.who.int/europe/news-room/fact-sheets/item/post-covid-19-condition.. On the basis of the definition of long COVID, the present study shows that approximately 33.4% (176) of the sample participants who reported symptoms after the acute phase of the disease, would be classified as long COVID subjects according to the WHO criteria.

A recent study revealed that 54% of patients diagnosed with COVID-19 experienced at least one symptom of long COVID which persists for one month¹³13 Bowe B, Xie Y, Al-Aly Z. Postacute sequelae of COVID-19 at 2 years Nat Med 2023; 29(9):2347-2357., these results are consistent with the Centers for Disease Control and Prevention (CDC) definition, which considers long COVID as symptoms lasting from 4 weeks onward³3 Davis HE, McCorkell L, Vogel JM, Topol EJ. Author Correction: Long COVID: major findings, mechanisms and recommendations. Nat Rev Microbiol 2023; 21(6):408. Erratum for: Nat Rev Microbiol 21(3):133-146. similar to what is observed in the present study, in which 49.9% of the patients experienced symptoms of long COVID for up to one month. Moreover, the appearance of symptoms related to the postacute sequelae of COVID-19 does not appear to be linked to the need for hospitalization during the acute phase of the infection, although it is considered a high risk factor⁵5 Ford ND, Slaughter D, Edwards D, Dalton A, Perrine C, Vahratian A, Saydah S. Long COVID and Significant Activity Limitation Among Adults, by Age - United States, June 1-13, 2022, to June 7-19, 2023. MMWR Morb Mortal Wkly Rep 2023; 72(32):866-870.. This is evidenced by the fact that 54.2% of the interviewed patients who had been diagnosed with COVID-19 reported the persistence or emergence of symptoms after acute infection, whereas only 7.8% were hospitalized during the initial phase of the disease. Once again, participants perception reported in the present study aligns with the known literature, since studies estimate that the incidence of long COVID in adults who do not require hospitalization during the acute phase of COVID-19 ranges from 7.5% to 41%⁵5 Ford ND, Slaughter D, Edwards D, Dalton A, Perrine C, Vahratian A, Saydah S. Long COVID and Significant Activity Limitation Among Adults, by Age - United States, June 1-13, 2022, to June 7-19, 2023. MMWR Morb Mortal Wkly Rep 2023; 72(32):866-870.. These data reveal a scenario of extreme heterogeneity and inconclusiveness in previous studies regarding hospitalization rates, which has significant implications for public health actions due to the wide variation in the results. It also demonstrates a concerning level of uncertainty about this matter in the literature which shows that it is necessary to further investigate this problem¹⁴14 Groff D, Sun A, Ssentongo AE, Ba DM, Parsons N, Poudel GR, Lekoubou A, Oh JS, Ericson JE, Ssentongo P, Chinchilli VM. Short-term and Long-term Rates of Postacute Sequelae of SARS-CoV-2 Infection: A Systematic Review. JAMA Netw Open 2021; 4(10):e2128568..

On the other hand, another point showed an important similarity with the literature. The interviews revealed the following temporal distribution in terms of the duration of symptoms after the acute phase of infection: symptoms lasting for two weeks (30%), symptoms lasting for one month (19.9%), or symptoms lasting for more than six months (21.6%). This finding is corroborated by others¹⁴14 Groff D, Sun A, Ssentongo AE, Ba DM, Parsons N, Poudel GR, Lekoubou A, Oh JS, Ericson JE, Ssentongo P, Chinchilli VM. Short-term and Long-term Rates of Postacute Sequelae of SARS-CoV-2 Infection: A Systematic Review. JAMA Netw Open 2021; 4(10):e2128568., in which a pattern or temporal trend for the persistence of long COVID symptoms has not been established; in the referred study, the persistence of symptoms was reported to last for two, five, and eight months. When long-term symptoms are analyzed by organ systems, the risks of pulmonary, gastrointestinal, and musculoskeletal impairments remain high even two years after acute SARS-CoV-2 infection¹⁵15 Nittas V, Gao M, West EA, Ballouz T, Menges D, Hanson SW, Puhan MA. Long COVID Through a Public Health Lens: An Umbrella Review. Public Health Rev 2022; 43:1604501..

In terms of general and respiratory symptoms, the results of the present study differ from those reported in the literature, as the percentages of patients who reported experiencing respiratory symptoms and fatigue after the initial SARS-CoV-2 infection (52.5% and 72.4%, respectively) are greater than those reported in previously published studies (39% and 49.6%)¹³13 Bowe B, Xie Y, Al-Aly Z. Postacute sequelae of COVID-19 at 2 years Nat Med 2023; 29(9):2347-2357.. This highlights that fatigue is one of the most prevalent symptoms in patients experiencing long COVID, surpassing even common respiratory symptoms, such as cough and dyspnea, in the acute phase of the infection. In contrast to other long-term symptoms, some studies have noted that fatigue and neurocognitive impairment persist longer and may even worsen over time¹⁶16 Xie Y, Choi T, Al-Aly Z. Association of Treatment with Nirmatrelvir and the Risk of Post-COVID-19 Condition. JAMA Intern Med 2023; 183(6):554-564.. The same study revealed that, between hospitalized and nonhospitalized individuals, there was no statistically significant difference among those who reported some level of fatigue after the acute phase of the disease.

Finally, with respect to cognitive symptoms, it is known from preexisting studies that a subjective cognitive impairment (SCI) is reported globally among patients experiencing long COVID, meaning that patients experience a subjective change in their own performance, with areas such as memory, concentration, orientation, and language affected¹⁷17 Ceban F, Ling S, Lui LMW, Lee Y, Gill H, Teopiz KM, Rodrigues NB, Subramaniapillai M, Di Vincenzo JD, Cao B, Lin K, Mansur RB, Ho RC, Rosenblat JD, Miskowiak KW, Vinberg M, Maletic V, McIntyre RS. Fatigue and cognitive impairment in Post-COVID-19 Syndrome: A systematic review and meta-analysis. Brain Behav Immun 2022; 101:93-135.. In the present study, the majority of participants (55.6%) who had been infected with COVID-19 reported experiencing persistent subjective cognitive symptoms after the initial infection; 64.6% of the patients reported experiencing memory loss, 53.5% reported experiencing difficulty concentrating, and 20.7% reported experiencing mental confusion, which is in line with the conclusions of the listed studies²2 Global Burden of Disease Long COVID Collaborators. Estimated Global Proportions of Individuals with Persistent Fatigue, Cognitive, and Respiratory Symptom Clusters Following Symptomatic COVID-19 in 2020 and 2021. JAMA 2022; 328(16):1604-1615.^,1717 Ceban F, Ling S, Lui LMW, Lee Y, Gill H, Teopiz KM, Rodrigues NB, Subramaniapillai M, Di Vincenzo JD, Cao B, Lin K, Mansur RB, Ho RC, Rosenblat JD, Miskowiak KW, Vinberg M, Maletic V, McIntyre RS. Fatigue and cognitive impairment in Post-COVID-19 Syndrome: A systematic review and meta-analysis. Brain Behav Immun 2022; 101:93-135.. Consequently, depending on symptoms, the cognitive aspect may be affected in the majority of people, implying a long-term need for specific attention to the neuropsychological system in each individual affected by COVID-19.

Some published studies have aimed to relate long COVID to some specific antiviral medications for COVID-19 that combine nirmatrelivir and ritonavir. Certain publications from early 2023 indicate that this medication is associated with a 26% lower risk of developing long COVID over a 6-month period, in addition to reduced risks of hospitalization and death after the acute phase of the infection - 24% and 47%, respectively¹⁵15 Nittas V, Gao M, West EA, Ballouz T, Menges D, Hanson SW, Puhan MA. Long COVID Through a Public Health Lens: An Umbrella Review. Public Health Rev 2022; 43:1604501.. However, more recent studies from 2024 revealed that, based on a specific sample analyzed, the likelihood of developing postacute symptoms was 16% among patients who used the antiviral during the acute phase of infection, whereas it was 14% among those who had long COVID but did not use the medication¹⁸18 Kubota T, Kuroda N, Sone D. Neuropsychiatric aspects of long COVID: A comprehensive review. Psychiatry Clin Neurosci 2023; 77(2):84-93.. There is still not enough scientific consensus on the efficacy of this medication in treating, preventing, or minimizing the effects of long COVID; more studies are needed to better understand the long-term effects of this medication.

It is important to mention that Long COVID has been studied by many authors by using retrospective data analyses and Artificial Intelligence (AI) to achieve an accurate analysis of the symptoms. In a recent study¹¹11 Ranzani OT, Bastos LSL, Gelli JGM, Marchesi JF, Baião F, Hamacher S, Bozza FA. Characterisation of the first 250 000 hospital admissions for COVID-19 in Brazil: a retrospective analysis of nationwide data. Lancet Respir Med 2021; 9(4):407-418., our group developed a method that allows analysis from medical records our University Hospital in São Paulo, Brazil. This tool showed excellent performance in investigating the effects of Long COVID on patients admitted to this hospital and followed up for several months after discharge. It is interesting to note that the analyses of the collected data from patients showed that dyspnea is a prevalent symptom which is similar to what we observed among the participants of the present study. These facts reinforce the idea that the perception of the Long COVID symptoms might became a very important element to identify the possible long-term symptoms associated with post COVID-19 and to prospect the seek for treatment and to prepare the health system for rehabilitation programs.

Applicability and management of public policies

Considering the entire context involving the perception of the participants of this study, it is necessary to evaluate the conditions of the post-COVID symptoms, especially in basic health units (UBSs) of the Health System in Brazil which may also be applicable in other countries that were severely affected by the pandemics. It is clear by several studies that many people have faced long-term symptoms or residual manifestations after COVID-19 and they are unaware of the proper way to seek assistance. Thus, it is important to listen to the public need according to their perception. In light of this reality, it is crucial for healthcare professionals, in collaboration with health managers from different government spheres, to develop strategies to manage the care of these patients.

The first initiative of the Federal Government regarding long COVID was implemented through GM/MS Ordinance 3872 in December 2021. This measure allocates specific resources to patients affected by the syndrome while also disseminating guidelines aimed at ensuring follow-up care for those experiencing postacute infection sequelae, covering a period of six months¹⁹19 Durstenfeld MS, Peluso MJ, Lin F, Peyser ND, Isasi C, Carton TW, Henrich TJ, Deeks SG, Olgin JE, Pletcher MJ, Beatty AL, Marcus GM, Hsue PY. Association of nirmatrelvir for acute SARS-CoV-2 infection with subsequent Long COVID symptoms in an observational cohort study. J Med Virol 2024; 96(1):e29333.. However, importantly, the limited understanding of the topic among professionals still hinders the implementation of specific measures in the care of these patients.

In 2022, the Manual for Assessment and Management of Post-COVID Conditions in Primary Health Care²⁰20 Brasil. Ministério da Saúde (MS). Portaria nº 3.872, de 23 de dezembro de 2021. Inclui procedimentos na Tabela de Procedimentos, Medicamentos, Órteses, Próteses e Materiais Especiais (OPM) do Sistema Único de Saúde - SUS. Diário Oficial da União; 2021. was released by the federal government, but the decentralization of actions resulted in local initiatives at the state and municipal levels, causing care for these patients to be uneven and ineffective across different territories. However, the mentioned manual is outdated and does not align with the reality of UBSs in the country. This happens because a significant portion of the guidelines require tests and consultations with specialists, with notoriously long waiting lists, leading to prolonged waiting times for patients to receive adequate treatment. Therefore, there is an urgent need to implement effective public policies focused on primary care in integrated regional networks with other levels of health care, aiming to encompass the significant portion of patients affected by post-COVID syndrome. Additionally, it is important to increase awareness among the population about the existence of long COVID, encouraging individuals to seek medical assistance and appropriate treatment.

The underreporting of COVID-19 cases in Brazil was a complex and heterogeneous phenomenon throughout the pandemic. It is estimated that the average rate of actual cases is 3.4 times higher than the reported number²¹21 Brasil. Ministério da Saúde (MS). Manual de Avaliação e Manejo das Condições Pós-COVID-19. Brasília: MS; 2022., meaning that approximately 130 million Brazilians were infected, compared with the 38 million reported cases between 2020 and 2023. At the beginning of the pandemic, underreporting was particularly high, estimated at a rate of 9.2%; this means that for every 100 actual cases, only 9.2 were reported²²22 Klein J, Wood J, Jaycox JR, Dhodapkar RM, Lu P, Gehlhausen JR, Tabachnikova A, Greene K, Tabacof L, Malik AA, Silva Monteiro V, Silva J, Kamath K, Zhang M, Dhal A, Ott IM, Valle G, Peña-Hernández M, Mao T, Bhattacharjee B, Takahashi T, Lucas C, Song E, McCarthy D, Breyman E, Tosto-Mancuso J, Dai Y, Perotti E, Akduman K, Tzeng TJ, Xu L, Geraghty AC, Monje M, Yildirim I, Shon J, Medzhitov R, Lutchmansingh D, Possick JD, Kaminski N, Omer SB, Krumholz HM, Guan L, Dela Cruz CS, van Dijk D, Ring AM, Putrino D, Iwasaki A. Distinguishing features of long COVID identified through immune profiling. Nature 2023; 623(7985):139-148.^,2323 Guyton AC, Hall JE. Tratado de fisiologia médica. 13ª ed. Rio de Janeiro: Elsevier Ltda; 2017.. This underreporting hindered the understanding of the true extent of the pandemic and the adoption of adequate and effective control measures. In the present study, 40.6% of the respondents reported having been previously infected with SARS-CoV-2, a number that may still be underestimated, reflecting the underreporting of cases. These data reflect a total of 215 people who are subreporting in this small universe, which, when expanded, aligns with the pandemic scenario in Brazil: the reporting rate of COVID-19 cases in the country is extremely low, which indicates an important lack of knowledge among government agencies on the real impact of the disease and the persistence of the long-term symptoms. Notably, without case reporting and without knowledge about acute infections among the population, the understanding of persistence and/or emergence of new symptoms is hindered; thus, the perception of long COVID cases is completely biased. Therefore, it is important to implement prevalence studies and measures to reduce the underreporting of COVID-19 cases, as this will help public authorities make more informed decisions and protect public health.

Finally, reinfection with SARS-CoV-2 is an important event to consider, as the number of reinfections can worsen an individual’s health condition. Previous studies have shown that individuals who are reinfected with COVID-19 are at high risk of postacute symptoms, including pulmonary, cardiovascular, hematological, gastrointestinal, renal, metabolic, neurological, musculoskeletal, and psychological long-term symptoms²⁴24 Palamim CVC, Siqueira BA, Boschiero MN, Marson FAL. Increase in COVID-19 underreporting among 3,282,337 Brazilian hospitalized patients due to SARS: A 3-year report and a major concern for health authorities. Travel Med Infect Dis 2023; 54:102616.. These results indicate that virus reinfection may contribute to the development of long COVID, with evident risk even in vaccinated individuals. Furthermore, the collected data indicating a considerable reinfection rate (171 participants) raises another concern because these patients are more likely to experience long-term symptoms in the acute phase of the disease than those who contract the disease only once.

Conclusion

As discussed earlier, to reduce the risk of long COVID after SARS-CoV-2 reinfection, it is imperative that public authorities provide support to reinfected individuals, primarily through comprehensive health care measures provided by multidisciplinary teams, aiming to treat severe long COVID symptoms and improve patients’ quality of life, along with quality rehabilitation, which can help individuals recover their physical and cognitive functions. In the Brazilian context, public policies to support reinfected individuals are still in the early stages, and it is necessary to ensure coverage and meet the specific needs of these individuals.

In this way, this study demonstrates it is important valuing public perception about Long COVID. Thus, by investigating the social perception of symptoms, we highlight which systems are most affected, allowing these patients to perceive the symptoms and seek appropriate help. Furthermore, by increasing public perception on the subject, society is allowed to cover public authorities from all spheres of power, demanding better care directed to Long COVID, insisting on effective public policies so that the problem can be combated with seriousness. Public agencies need to value public opinion, and studies that investigate social perception of the consequences of COVID highlight the need for popular prestige, listening and action aimed at the population. The importance of social education on the topic, therefore, is the basis for a better health system aimed at caring for the population.

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