key: cord-0786829-d4wt9dqp
authors: Seng, J. J. B.; Yeam, C. T.; Huang, W. C.; Tan, N. C.; Low, L. L.
title: Pandemic related Health literacy - A Systematic Review of literature in COVID-19, SARS and MERS pandemics
date: 2020-05-11
journal: nan
DOI: 10.1101/2020.05.07.20094227
sha: 64084ad9059ed204110768fd0cc2d274c4f65f7d
doc_id: 786829
cord_uid: d4wt9dqp

Background: Health literacy plays an essential role in ones ability to acquire and understand critical medical information in the COVID-19 infodemic and other pandemics. Purpose: To summarize the assessment, levels and determinants of pandemic related health literacy and its associated clinical outcomes. Data sources: Medline, Embase, PsychINFO, CINAHL, arXiv, bioRxiv, medRxiv, and Social Science Research Network. The start date was unrestricted and current as of 22 April 2020. Study selection Studies which evaluated health literacy related to novel coronavirus disease 2019 (COVID-19), Severe Acute Respiratory Syndrome (SARS) or Middle East Respiratory Syndrome (MERS) Data extraction Data on the characteristics of study designs, instruments, participants and level of health literacy were collected. Items used in instruments were grouped under the themes of knowledge, attitudes and practices. Determinants of health literacy were grouped into five domains (socio-demographic, medical, psychological/psychiatric, health systems related and others). Data synthesis: Of 2,065 articles screened, 70 articles were included. 21, 17 and 32 studies evaluated health literacy related to COVID-19, SARS and MERS, respectively. The rates of low pandemic health literacy ranged from 4.3 to 57.9% among medical-related populations and 4.0% to 82.5% among non-medical populations. Knowledge about symptoms and transmission of infection; worry about infection and, practices related to mask usage and hand hygiene was most frequently evaluated. Socio-demographic determinants of health literacy were most studied, where higher education level, older age and female gender were associated with better health literacy. No studies evaluated outcomes associated with health literacy. Limitations Non-English articles were excluded. Conclusion: The level of pandemic related health literacy is sub-optimal. Healthcare administrators need to be aware of health literacy determinants when formulating policies in pandemics.

With the rapid progression of the novel coronavirus disease 2019 (COVID-19) into a pandemic infecting over 2.5 million patients worldwide, the need to gather and synthesize health-related information to make timely behaviour changes among people has become quintessential. (1, 2) This comes in the wake of an "infodemic" with evolving scientific knowledge about infections being generated daily, which has led to reversals in infection prevention recommendations made within a short span of time. (2) (3) (4) For example, the use of cloth masks during the early stages of the COVID-19 pandemic was discouraged by the World Health Organisation due to uncertainty about its efficacy. (3) However, its potential use in slowing the spread of COVID-19 has led to subsequent recommendations by the US Centers for Disease Control and Prevention for it to be worn by healthy individuals. (4) The ease of access to information via social and online media platforms has also become a double-edged sword in this pandemic where there has been substantial propagation of misinformation. (5) Faced with the continuous influx of information related to this pandemic, an individual's level of health literacy exerts a vital role in one's ability to acquire, discern and understand accurate medical information.

Health literacy is broadly defined as the "level of capacity one has to obtain, process and understand basic health information and services needed to make appropriate health decisions." Europe where 47% of the population were shown to have limited health literacy. (8) In the setting of non-communicable diseases, the association between health literacy with increased healthcare costs, morbidity and mortality is well-established. (9) The equal importance of health literacy in communicable diseases was highlighted in the recent COVID-19 crisis and previous coronavirus pandemics such as the Severe Acute Respiratory Syndrome (SARS) and Middle East Respiratory Syndrome (MERS). (1, 10) In contrast to general health literacy required for the prevention or management of chronic diseases, these pandemics require an individual's readiness and adaptive ability in developing their pandemic related and critical health literacy quickly. This is critical as the rapid and successful implementation of infectious diseases control measures requires the collective compliance of all individuals. (11, 12) Network (SSRN) were extracted for evaluation. Keywords employed in the search strategy included terms related to health literacy as well as the viruses and syndromes implicated in the three coronavirus pandemics which were namely COVID-19, MERS and SARS. Terms related to health literacy were adapted from reviews which evaluated health literacy in other patient populations. (18, 19) The full search strategy was detailed in Supplementary File 1. The start date of the search was unrestricted and current as of 22 April 2020.

Full-text articles, both peer-reviewed and non-peer reviewed in the English language were retrieved from the eight databases. Studies which evaluated health literacy related to COVID-19, SARS or MERS among adult participants aged ≥ 18 years old from the general population, healthcare sectors and infected patients were included. For the study designs, both interventional and observational studies such as cohort, cross sectional and case control studies were included. Case series, case reports, other irrelevant meta-analyses and systematic reviews were excluded. We also excluded studies which evaluated paediatric populations and non-human subjects.

Two independent reviewers (JJB Seng and CT Yeam) performed the screening and inclusion of articles.

All disagreements encountered during the review process were discussed. In situations where the disagreements could not be resolved, a third independent reviewer (CWH Huang) arbitrated to achieve consensus.

Data extracted included the socio-demographic and clinical characteristics of the study participants such as their age, race/ethnicity, education levels, income levels, study designs, instruments used for assessment of health literacy, the definition of health literacy used in studies, level of health literacy, factors associated with health literacy and clinical outcomes associated with health literacy.

For the risk of bias assessment, the Quality Assessment Tool for Studies by National Health, Lung and Blood Institute was adopted to evaluate the methodological quality of included articles.(20) Each study is rated as low, moderate and high risk of bias by the two independent reviewers (JJB Seng and CT Yeam) based on the responses obtained from the ten items. In situations where insufficient information was available to score an item, the authors of the study were contacted for clarification. If the authors could not be contacted, the item was rated as high risk of bias. All disagreements were resolved via discussion between the two reviewers. Only studies which were rated as low and moderate risk of bias were included in this review.

Descriptive statistics were used to summarize the characteristics of included studies. With regards to the level of health literacy, we reported the average percentage of correct answers or the percentage of participants with low health literacy as defined by cut-offs described in each study, where available. As there are no gold-standard health literacy instruments developed for COVID-19, SARS or MERS(21), significant heterogeneity is expected in the types of tools used for assessment of health literacy across participants. Consequently, meta-analysis could not be performed. Questions from instruments used across included studies were classified into three main themes, which were 1) knowledge, 2) attitudes and 3) practices, to help guide future development of standardised COVID-19 and pandemic health literacy tools. The analyses were segregated by medical and non-medical populations due to the expected differing levels of health literacy in the two populations. For studies where the questionnaires were not available, study authors were contacted for the questionnaire. If there were no replies from the authors, the themes were extracted from the description of the questionnaires in the main text. A framework for core items to be included in pandemic health literacy tools was also proposed based on common themes assessed across studies.

For factors associated with better health literacy, they were categorized into five domains which encompassed socio-demographic, medical, psychological/psychiatric, health systems related and others.

A narrative review was provided for the factors evaluated among included studies. Clinical outcomes associated with poor health literacy among patients infected with COVID-19, MERS and SARS included time from illness onset to seeking medical treatment, hospitalisation and duration of hospitalisation, admission to intensive care units and length of ICU stay, need for ventilator support, recovery from infection and re-infection.

This study was not funded by any organisation.

. CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)

The copyright holder for this preprint this version posted May 11, 2020. . https://doi.org/10.1101/2020.05.07.20094227 doi: medRxiv preprint Figure 1 shows the flowchart for the inclusion of articles. A total of 1,965 published articles and 40 pre-prints were retrieved. After removal of duplicates, exclusion of irrelevant articles and inclusion of articles identified from hand-searching, a total of 70 articles were included in this review. The percentage of concordance during the initial article screening was 90%. Details pertaining to the study designs and characteristics of participants among included studies were reported in Supplementary File 2. For the risk of bias, 48 (68.5%) and 22 (31.4%) studies were rated as low and moderate risk of bias.

No studies were rated as high risk of bias (Supplementary File 3). Table 1 shows a summary of the characteristics of the included studies. Majority of included studies were cross-sectional in design (n=65, 92.9%) and were conducted during the pandemics (n=69, 98.6%). 21 (30%) studies recruited more than 1000 participants.

A total of 21 (30.0%) studies examined health literacy related to COVID-19 ( Table 1) . Majority of the studies were conducted in Asia (71.4%) and North America (14.3%). Most studies were conducted among the general population (n=10, 47.6%). The primary mode of health literacy assessment across studies was via online questionnaires (n=20, 95.2%). Aspects of health literacy that were assessed in the instruments included knowledge (n=20, 95.2%), attitudes (n=17, 81%) and practices (n=14, 66.7%), of which only 7 (33.3%) studies performed validation of their questionnaire. Most questionnaires (n=8, 38.1%) contained 11-20 items. Pertaining to health literacy, the average percentage of correct answers among medical personnel ranged from 67.0 to 94.8%, and low health literacy was reported among 5. Table 1) . Majority of studies were mostly performed in Asia (82.4%), Europe (11.8%) and North America (5.9%). The most common groups of study participants included the general population (n=8, 58.8%) and healthcare professionals (n=3, 17.6%). For the assessment of health literacy, these were conducted primarily via . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)

The copyright holder for this preprint this version posted May 11, 2020 

Among the pandemics, the most number of studies examined health literacy related to MERS (n=32, 45 .7%) ( Table 1 ). The studies were mostly conducted in Asia (n=30, 93.8%) and Europe (n=2, 6.3%)

where the majority of them were conducted in Saudi Arabia (n=27, 84.4%). The most common group of participants recruited comprised of healthcare professionals (n=11, 34.4%) and medical students 

Among the three themes, pandemic related knowledge was most studied, followed by practices and attitudes (Tables 2-4 ). In the knowledge domain, symptoms (13, 14, 16, , transmission (14, 16, 22, 23, 25-29, 31-34, 37-49, 51, 52, 55-57, 59-78) and incubation period of the virus (16, 23, 26-28, 32, 37, 38, 41, 42, 46-50, 52-57, 59-64, 66-69, 78) ; management and treatment options (14, 16, 22-24, 26, 27, 29, 37, 39-43, 46, 48-51, 55, 56, 58, 60, 62, 64, 66-70, 78, 79) ; and clinical outcomes associated with infection (13, 16, 23-27, 29, 34, 37, 38, 40, 48, 50-52, 55, 56, 59, 61, 63-67, 69, 74-76, 78-81) ; high risk populations for infection (16, 23, 26, 27, 29, 37, 39-41, 48, 49, 55- . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)

The copyright holder for this preprint this version posted May 11, 2020. . 1 0 59, 63, 65, 67, 68, 72, 78, 79) ; availability of vaccine (16, 29, 37, 39, 40, 42-44, 48, 52, 55, 56, 58, 60-63, 65, 68, 70, 74-76, 79 ); role of hand hygiene (14, 16, 24, 25, 28, 29, 42, 43, 45, 47, 48, 50, 52, 55-58, 60, 64, 66, 69-71, 82, 83) was most studied for medical and non-medical staff. (Table 2 ) For medical related populations specifically, knowledge about epidemiology (29, 37, 39, 42, 44, 53, 58, 59, 61-63, 65, 66, 78, 79) and diagnosis of infection (16, 46, 48, 49, 55, 56, 58-63, 67, 76) were also frequently evaluated.

For attitudes about pandemics, worry/fear/helplessness about pandemic (13, 14, 22, 28, 31, 33, 49, 51, 52, 60, 61, 63, 65, 68, 72, 76-78, 81, 83, 84) , confidence in governments' ability to manage pandemic (13, 23, 28, 30, 33, 41, 61, 63, 65, 68, 70, 77, 78, 82) and perceived severity of infection as a public health problem (13, 29, 39, 41, 44, 45, 59, 65, 70, 72) was most commonly assessed. (Table 3) For practices in pandemics, behaviours related to mask utilization (14, 16, 23, 26, 28, 30, 32, 33, 35, 38, 40, 48, 59, 61, 63, 65, 70, 73, 80, 82, (84) (85) (86) , hand hygiene (14, 16, 28, 32, 33, 35, 38, 40, 41, 46, 59-61, 63, 65, 70, 73, 77, 85, 86) , personal hygiene (16, 30, 33, 35, 38, 41, 48, 60, 61, 63, 65, 67, 70, 73, 80, 82, (84) (85) (86) and information seeking (16, 25, 28-30, 33, 35, 36, 42, 44, 48-51, 53-56, 58, 59, 63, 65, 69, 70, 72, 75, 76, 80, 84, 85, 87) were most commonly studied. (Table 4 ) Figure 2 shows the proposed framework (PANDEMIC-HL) for items to be included in generic pandemic health literacy tools.

Across the five domains for health literacy related factors, 34 factors were identified. (Table 5 ) Among these, socio-demographic-economic and health systems-based domains were the most studied. Sociodemographic factors which were commonly associated with better health literacy included higher educational level (23, 26, 27, 33, 34, 36, 37, 39, 40, 42, 43, 45, 72-77, 80-82, 88, 89) , increased age (23, 26, 30, 37, 40, 43, 48, 50, 63, 65, 72, 74, 75, 78, 84, 85) and female gender (13, 16, 23, 26, 33, 34, 38, 40, 41, 44, 45, 60, 62, 72, 74, 78, 80, 81, 84, 85, 89) . For health systems-based factors, increased experience in the healthcare system (48, 56, 63, 76, 77, 89) and attendance in health education programs (28, 33, 58, 60, 71, 78) were associated with better health literacy. For medical and psychiatric/psychological factors, increased general health literacy (13, 30) and increased anxiety about the spread of infection (28, 33, 80, 84) were associated with better health literacy. Lastly, other factors 1 1 associated with better health literacy included the use of traditional sources of information such as newspaper or television (28, 33, 75) .

Among the included studies, no studies evaluated clinical outcomes related to COVID-19, SARS or MERS. . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted May 11, 2020. . https://doi.org/10.1101/2020.05.07.20094227 doi: medRxiv preprint For populations at increased risk of poor clinical outcomes of infections such as the elderly, immunocompromised patients, human-immunodeficiency virus or with multiple comorbidities, they form high priority populations where the levels of pandemic health literacy should be assessed. (95, 96) In the context of the current COVID-19 pandemic, our review only found 1 study which specifically evaluated the health literacy related to COVID-19 among these high-risk populations. (13) It is imperative that future research is undertaken to evaluate the health literacy among these patient populations for targeted interventions to be designed for patients if required.

Significant heterogeneity in the instruments used for the assessment of pandemic related health literacy was noted in our review. Currently, there is no gold-standard instrument which evaluates pandemicrelated health literacy. Given the need for validated and standardised tools to be created to facilitate the evaluation of pandemic related health literacy, the PANDEMIC-HL framework was proposed to guide the selection of topics to be addressed in instruments. It was modelled after psychosocial models of health behaviours and encompassed key topics which were frequently evaluated in instruments across the three pandemics. (97) It is hoped that the framework will serve as a foundation for facilitating the development of health literacy tools for future pandemics. is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted May 11, 2020. . https://doi.org/10.1101/2020.05.07.20094227 doi: medRxiv preprint this may limit the generalizability of the study results. (98) Additionally, the validity of these study results may be affected as these surveys commonly suffer from poor response rates. (98) With regards to the determinants of pandemic related health-literacy, higher education levels, older age, female gender, and being employed were the most studied factors associated with higher pandemic . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted May 11, 2020. .

The main strength of this review was that health literacy in previous coronaviruses related pandemics such as SARS and MERS were evaluated to provide a more comprehensive overview of pandemic related health literacy. However, the findings from this review should also be interpreted with the following limitations. Firstly, while we adopted a reasonably comprehensive search strategy, potentially relevant articles may have been missed. Finger searching within the references of included articles was performed to minimize this omission of potentially relevant articles. Secondly, we were only able to include articles in the English language due to the language limitations of the authors. Thirdly, we were not able to perform meta-analyses for the overall level of pandemic related health literacy and their determinants due to the heterogeneity in instruments. With the development of a standardised instrument for the assessment of health literacy related to pandemics, future studies should consider using meta-analyses to compare the level of health literacy across different populations. Lastly, the full questionnaires could not be accessed for 27 studies. While themes described in the main text of these articles were carefully extracted, we could not rule out the omission of themes which were not described. Future health literacy studies should append their questionnaires to allow meaningful evaluation of the study results.

Overall, the level of pandemic related health literacy remains sub-optimal among both the medical and non-medical population. This is worrisome given the critical role health literacy serves in reducing the spread of contagion and mitigating the effects of pandemics. There is an urgent need to develop up-todate, validated and standardised questionnaires for the rapid assessment of pandemic-related health literacy. Important determinants associated with better levels of health literacy such as older age, female gender, employment status and education level were highlighted in this review. Healthcare administrators and policymakers need to be mindful of these determinants when formulating dissemination of critical pandemic related information and interventions to improve the health literacy of the population. More studies are required to evaluate the clinical outcomes associated with pandemic related health literacy.

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The copyright holder for this preprint this version posted May 11, 2020. .

JJB Seng was the study's principal investigator and was responsible for the conception, initial literature review and design of the study. CT Yeam, CW Huang, NC Tan and LL Low were the co-investigators. JJB Seng, CT Yeam and CW Huang were responsible for the screening and inclusion of articles and data extraction. All authors contributed to the data analyses and interpretation of data. JJB Seng prepared the initial draft of the manuscript. All authors revised the draft critically for important intellectual content and agreed to the final submission. 

. CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted May 11, 2020. . https://doi.org/10.1101/2020.05.07.20094227 doi: medRxiv preprint . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted May 11, 2020. . is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted May 11, 2020. . .

It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted May 11, 2020. Definitions of terms used in precautionary measures e.g. "safe distance", "close contacts", " transient contacts" is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

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Control measures implemented by government e.g. restriction of travel to China Repercussions associated with non-compliance with measures implemented by government or authorise

Control measures implemented by healthcare institutions

It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

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Belief that infection is a biochemical weapon developed by foreign countries or terrorists

Feelings of fatigue after outbreak - is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted May 11, 2020. is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted May 11, 2020. .

It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted May 11, 2020. is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted May 11, 2020. 

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Guarantor's name JJB Seng is the guarantor of this work and, as such, had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.