SLE and COVID-19
Research type
Research Study
Full title
Investigating the How’s and Why’s of Health Information for SLE Patients Faced with the COVID-19 Public Health Crisis
IRAS ID
287823
Contact name
Ian N Bruce
Contact email
Sponsor organisation
University of Manchester
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Research Summary
During the COVID-19 pandemic there have been many sources of misinformation that may have serious implications for patients with chronic diseases. Conflicting health messages can result in decision-making based on unverified information, contribute to stress/anxiety, and increase individual risk. Mitigating adverse consequences of accessing, spreading, and acting on misinformation related to COVID-19 is critical. Understanding how to effectively target heath information will serve to attenuate risk and improve health literacy during COVID-19 and beyond.
Systemic lupus erythematosus (SLE) is a chronic disease of the immune system where patients have periods of remission and disease flare-up, sometimes with life-threatening consequences. Misinformation regarding COVID-19 is especially problematic for SLE patients as they are worried both about contracting COVID-19 because of their compromised immune state and experiencing an SLE flare precipitated by impaired access to healthcare, loss of employment, and anxiety about self and family.
This research will increase understanding of how SLE patients access information, what sources of information are considered trustworthy, and how it impacts disease management and related stress. This will inform the development of interventions to improve the dissemination of public health information for immunocompromised populations and ensure messages are delivered through channels that meet the identified needs of vulnerable populations in the UK and internationally.
This is an international study being led from Canada using existing rheumatology networks. This application is only relevant for the UK sites. There are three phases to the study. In phase 1 suitable lupus patients will be identified in rheumatology clinics and asked if they will complete an online survey. Phase 2 involves conducting a social media analysis of key platforms identified from phase 1. Phase 3 will be follow-up interviews with some SLE participants and KIs (rheumatologists, advocacy organisations).Summary of Results
Lay summary – Health information use by patients with SLE pre and during the COVID-19 pandemic
People get information about their health from many different sources including the internet, news and social media outlets. Sometimes this information can be false, either unintentionally or deliberately. False information can have serious consequences such as undermining trust in health providers, influencing patient decision-making and contributing to fear and anxiety. These consequences can be particularly concerning for those with chronic conditions such as lupus. During the COVID-19 pandemic the spread of false information increased.
This study ran an international survey to ask lupus patients how they accessed health information, their preferred sources and what level of trust they had in each source, prior to and during the COVID-19 pandemic. The study also asked about any self-perceived negative impacts from accessing health information from sources other than medical professionals.
2111 lupus patients from ten countries, three continents (Asia, North America and Europe) were surveyed between June 2022 to December 2021. The survey asked participants about where they got their health information from pre (before 11th March 2020) and during (after 11th March 2020) COVID-19. Examples of places where information could come from included lupus specialist, GPs, pharmacist, other care providers, peers, support organisations, news media, social media) Most patients preferred to get their health information from lupus specialists and GPs. However, specialists and GPs were accessed less frequently during COVID-19. News outlets were the next most used method and social media the least. Using these two latter methods increased from pre to during COVID-19. Nearly one fifth of people reported that information accessed through news/social media had a negative impact.
The study findings demonstrated that lupus specialists and GPs were the most preferred and trusted sources of health information for individuals with SLE, and news media and social media—less trusted sources—were accessed more frequently during the pandemic. Our results suggest that increasing accessibility to lupus specialists and GPs both in person and virtually will be important to reduce the consequences of accessing and acting on false information.REC name
Yorkshire & The Humber - Bradford Leeds Research Ethics Committee
REC reference
21/YH/0040
Date of REC Opinion
9 Feb 2021
REC opinion
Favourable Opinion