June 2017
Volume 58, Issue 8
Open Access
ARVO Annual Meeting Abstract  |   June 2017
Understanding the Patient’s Perspective in Herpes Simplex Keratitis – Lessons from a Patient Involvement Group in the West Midlands, United Kingdom.
Author Affiliations & Notes
  • Xiaoxuan Liu
    Ophthalmology Department, Sandwell and West Birmingham NHS Trust, Birmingham, United Kingdom
  • Sai Kolli
    University Hospitals Birmingham NHS Foundation Trust, Birmingham, United Kingdom
  • Peter McDonnell
    Ophthalmology Department, Sandwell and West Birmingham NHS Trust, Birmingham, United Kingdom
  • Amit Patel
    Heart of England NHS Foundation Trust, Birmingham, United Kingdom
  • Geraint P Williams
    Worcestershire Acute Hospitals NHS Trust, Worcester, United Kingdom
  • Footnotes
    Commercial Relationships   Xiaoxuan Liu, None; Sai Kolli, None; Peter McDonnell, None; Amit Patel, None; Geraint Williams, None
  • Footnotes
    Support  None
Investigative Ophthalmology & Visual Science June 2017, Vol.58, 1351. doi:
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      Xiaoxuan Liu, Sai Kolli, Peter McDonnell, Amit Patel, Geraint P Williams; Understanding the Patient’s Perspective in Herpes Simplex Keratitis – Lessons from a Patient Involvement Group in the West Midlands, United Kingdom.. Invest. Ophthalmol. Vis. Sci. 2017;58(8):1351.

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      © ARVO (1962-2015); The Authors (2016-present)

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Abstract

Purpose : Herpes simplex keratitis (HSK) is a painful recurring disease that may require long term anti-viral prophylaxis, multiple hospital attendances and is potentially blinding. There are currently no published patient reported outcomes for HSK, therefore understanding of the patient’s perspective remains unclear. The purpose of this exercise is to establish the first patient involvement group for HSK in the West Midlands (WM) region of the United Kingdom, and provide an opportunity for patients to steer the direction of future research, as well as share their perspective relating to HSK care through a patient involvement survey.

Methods : Permission was secured through National Institute for Health Research - Research Design Service WM and individual hospital trusts. 29 patients attending ophthalmology clinics in 4 regional centres participated in an online survey, and were subsequently followed-up by telephone interviews. Patients who agreed were asked to rank and discuss 9 areas research in order of priority, including risk factors for recurrence, how quickly infection can be treated, treatment failure, improving diagnostic tests, uncertainties regarding treatment resistance, need for long-term treatment, risk factors for developing infection, impact on quality of life and frequency of hospital visits.

Results : This exercise demonstrated that patients’ top priorities for research are risk factors for recurrence (6.5/9), treating the infection quickly (ranking 5.6/9) and improving diagnostic tests (5.6/9). Other themes which emerged included difficulties in gaining rapid access to ophthalmic specialists in acute infection, difficulties in long term symptom control, and the need for greater in-depth patient education.

Conclusions : With consideration of the patient’s priorities, future research is required to improve diagnostics and disease monitoring, and to determine risk factors for recurrence and resistance. Whilst rapid-access care, patient-specific treatment regimens, and meaningful patient education are potential approaches to improving clinical care.

This is an abstract that was submitted for the 2017 ARVO Annual Meeting, held in Baltimore, MD, May 7-11, 2017.

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