Long Covid requires a global response centred on equity and dialogue

ABSTRACT

Long Covid, or Post-Covid Conditions, is a global health problem. Yet we know strikingly little about the different experiences of Long Covid patients cross-nationally. To address this shortcoming, we conducted an online survey of Long Covid patients active on social media in the U.S. (n = 334, October to December 2021) and Brazil (n = 144, January to April 2022). Our analysis of short answer responses indicates patient dissatisfaction with medical care provided for Long Covid in both the U.S. and Brazil. For Long Covid patients in Brazil, there were additional concerns raised about the lack of local expertise about their condition. Based on these results, we urge policymakers to expand the education of medical professionals in order to raise awareness of Long Covid. Experts in the Global North should also be encouraged to engage in dialogue with patient groups and experts in the Global South, in order to better understand how local contexts shape the experience of Long Covid.

KEYWORDS:

• Long Covid
• chronic illness
• Global South
• patient experiences
• health communication

Responsible Editor Maria Emmelin

Responsible Editor Maria Emmelin

Acknowledgments

We thank the research assistance of Gabrielle Finestone, and students in Gil Eyal’s Fall 2021 class on “Trust and Mistrust in Science” at Columbia University. We also thank the INCITE Institute for administrative support. Additionally, we thank our study participants for sharing their experiences with us.

Author contributions

• Larry Au (Conception or design of the work, Data collection, Data analysis and interpretation, Drafting the article, Critical revision of the article, Final approval of the version to be submitted)

• Cristian Capotescu (Conception or design of the work, Data analysis and interpretation, Critical revision of the article, Final approval of the version to be submitted)

• Amanda Curi (Data collection, Data analysis and interpretation, Final approval of the version to be submitted)

• Renan Gonçalves Leonel da Silva (Conception or design of the work, Data collection, Data analysis and interpretation, Critical revision of the article, Final approval of the version to be submitted)

• Gil Eyal (Conception or design of the work, Data analysis and interpretation, Critical revision of the article, Final approval of the version to be submitted)

Disclosure statement

No potential conflict of interest was reported by the author(s).

Context

To date, there have been a growing number of studies that try to characterise the epidemiology and experiences of patients suffering from Long Covid in the Global North, such as in the United States. Less is known about Long Covid globally, particularly in the Global South. Our study begins to look at the relevant points of comparison between the patient experiences with Long Covid in the United States and Brazil.

Ethics and consent

This study was approved by Columbia University’s Institutional Review Board (Protocol # AAAT8370), and informed consent was secured from study participants. We only received ethical review from our home institution and did not receive local ethical permission in Brazil, as our internet-based study recruited participants through social media platforms rather than clinics or organisations based in the country. We were guided in our study by our Brazilian collaborators (Curi and da Silva).

Additional information

Funding

Part of this project was funded by Facebook Research through the INCITE Institute at Columbia University. Our funder played no role in data collection, data analysis, writing up, and dissemination of this study.