To the Editor:
Patients with recurrent acute anterior uveitis (AAU) often become “experts by experience”, which NHS Improvement defines as “someone who has personal, lived experience of using health, mental health and/or social care services” [1]. Consequently, we have observed AAU patients self-diagnose and self-manage recurrences of their disease with corticosteroid eyedrops. Supported self-management for patients with chronic diseases, such as diabetes mellitus and asthma, is potentially as effective as standard medical care and is recognized as having a positive impact on quality of life [2, 3]. AAU patients, however, are usually required to attend A&E to access corticosteroid eyedrop treatment for their acute flares. This is a time-consuming process, which can result in delayed treatment and poorer outcomes, such as ocular hypertension and posterior synechiae.
There is an unmet need for a regulated service providing “experienced” AAU patients with prompt access to corticosteroid eyedrops, whilst providing a framework to capture and manage potential complications outside the hospital setting. There is a paucity of previous studies, which have explored quality of life of patients with recurrent AAU, and which have utilized qualitative methodologies, as part of “co-designing” interventions with patients [4].
In 2019, we initiated a service improvement project at Moorfields’ Eye Hospital, London, UK, to explore the experience of patients with AAU and the acceptability of a mobile Smartphone application (app) in supporting self-management. We conducted a qualitative analysis with a focus group consisting of uveitis specialists and patients diagnosed with recurrent AAU, who had “lived experience” of accessing Moorfields A&E or uveitis clinic services for their condition. Discussions were recorded and transcribed, and a thematic analysis was conducted to evaluate the need for, and acceptability of, such an app.
Two themes were noted: “complexity of living with recurrent AAU” and “needs of patients with recurrent AAU”. Patients emphasized the physical burden of living with AAU including pain, photophobia, decreased vision and recurrent flare-ups. Other concerns included frustration with the current eyecare system and impact of the condition on their quality of life, due to the frequent hospital attendances and long waiting times in A&E. Patients tended to postpone these attendances, leading to worsening of their condition.
All participants expressed positive views regarding an app, which would enable rapid access to corticosteroid eyedrops, specialist AU (anterior uveitis) services and a peer support network. They indicated that it would be more acceptable to remotely report their symptoms of an acute flare and request corticosteroids eyedrops, via an app, than to present to A&E for an eye examination and prescription. After accessing treatment, they felt it would be acceptable to visit their community optometrist (to record their vision and intraocular pressure data in the app) and attend potentially deferred follow-up in a specialized AU clinic.
In conclusion, recurrent AAU has a significant impact on patients’ quality of life. Focus group participants felt that self-management of recurrent AAU, supported by an app, would be acceptable. Furthermore, this service would allow remote monitoring of patients and provide prompt access to treatment, whilst reducing burden on hospital services.
References
Slay J. & Stephens L. NHS improvement. Co-production in mental health: A literature review. London: new economics foundation (2013). https://improvement.nhs.uk/resources/experts-experience/.
DAFNE Study Group. Training in flexible, intensive insulin management to enable dietary freedom in people with type 1 diabetes: dose adjustment for normal eating (DAFNE) randomised controlled trial. BMJ. 2002;325:746.
Hodkinson A, Bower P, Grigoroglou C, Zghebi SS, Pinnock H, Kontopantelis E, et al. Self-management interventions to reduce healthcare use and improve quality of life among patients with asthma: systematic review and network meta-analysis. BMj. 2020;370:m2521.
Jones RK, Jefferis JM. Is qualitative research under-represented in ophthalmology journals? Eye. 2017;31:1117–9.
Funding
Funding received from the National Coordinating Centre for Public Engagement (NCCPE) in the form of an Engage award (Ref: PP RBI 244103).
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Lahiri, S., Sumodhee, D., Alkarmi, K. et al. Exploring the potential for acute anterior uveitis (AAU) patients to self-manage recurrences via a mobile application: qualitative analysis of a Moorfields Patient Experience focus group. Eye 35, 2895–2896 (2021). https://doi.org/10.1038/s41433-020-01190-6
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DOI: https://doi.org/10.1038/s41433-020-01190-6