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Impact of the COVID-19 pandemic on individuals with nystagmus and an exploration of public assumptions about the condition: an electronic questionnaire study

Rennie, Katherine, Alagendran, Rajeeth, Lee, Helena, Griffiths, Helen, Theodorou, M., Shawkat, F., Carter, P., Erichsen, Jonathan ORCID: https://orcid.org/0000-0003-1545-9853, Dunn, Matthew ORCID: https://orcid.org/0000-0002-0295-2182, McIlreavy, Lee ORCID: https://orcid.org/0000-0002-8986-0562, Thomas, N., Ward, Katherine, Whittle, J., Sanders, J., Harris, C., McLean, R., Lawrence, D., Ricketts, S., Gliksohn, A., Thomas, M., Kuht, H., Kubavat, H., Woodhouse, Joy ORCID: https://orcid.org/0000-0002-7149-5077, Arblaster, G. and Self, J. 2022. Impact of the COVID-19 pandemic on individuals with nystagmus and an exploration of public assumptions about the condition: an electronic questionnaire study. BMC Ophthalmology 22 , 268. 10.1186/s12886-022-02484-x

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Abstract

Purpose Nystagmus is a disorder characterized by uncontrolled, rhythmic oscillations of the eyes. It often causes reduced visual function beyond reduced visual acuity alone. There is a paucity of literature regarding the public understanding of nystagmus, and there are no published data on the impact of the COVID-19 pandemic on people living with the condition. This study explores the self-reported impact of the COVID-19 pandemic on those with nystagmus, and examines both public understanding of how nystagmus affects people who have it and the perceptions of public understanding by those with the condition and their carers. Methods A qualitative questionnaire was designed following a stakeholder engagement process. This questionnaire was advertised via social media platforms and charity websites to achieve widespread recruitment. Data were collected between November and December 2020. Participants were divided into two groups based on their response to the question: “Do you, or anyone you know well, have nystagmus?”. Questions were posed to participants in a purpose-built, branching survey. The resulting data were analyzed using descriptive and inferential statistical methods. Results One thousand six hundred forty-five respondents were recruited, of which 849 (51.6%) answered “Yes” to the initial filtering question. Analysis showed that, broadly, public understanding of nystagmus differs from the perception of it by those with nystagmus and their carers, that the COVID-19 pandemic has had a significant impact on those with nystagmus, and that respondents who have met someone with nystagmus, even briefly, tend to have a greater understanding of the impact of the condition. Conclusion This study highlights the lack of public awareness regarding nystagmus and suggests opportunities to increase the awareness of nystagmus without the need for extensive knowledge of the condition. The COVID-19 pandemic has posed additional difficulties for those living with nystagmus, which is likely to be comparable among those with similar ocular disorders. Peer Review reports

Item Type: Article
Date Type: Publication
Status: Published
Schools: Optometry and Vision Sciences
Additional Information: This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made.
Publisher: BioMed Central
ISSN: 1471-2415
Date of First Compliant Deposit: 11 July 2022
Date of Acceptance: 31 May 2022
Last Modified: 30 Nov 2022 08:17
URI: https://orca.cardiff.ac.uk/id/eprint/151200

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