Table 2

Example quotes from HSK patient survey narrative data

ThemeExample Quotes
Theme 1: controlling symptoms‘I am on 14 drops a day for the last year, it is difficult to keep up’
‘I rely on my wife to put in my drops because my hands don’t work well’
‘No matter what treatment you have, the eye is never 80% comfortable’
‘Sometimes so painful, can’t tolerate light and causes severe headaches’
‘When I have had the infection in my eye, immediate treatment helps, but my eye is weak for up to a year afterwards’
‘I have to take drops every day for the last 4 years, it seems unlikely I will ever be free of them’
‘Worse bit is putting the drops in’
‘Need to get quicker pain relief’
‘Anything which would make treatment more effective especially drops, rather than ointment’
Theme 2:
access to the ophthalmologist
‘Early identification for front line non-specialist professionals, for example, Opticians, general practitioners’
‘Direct access to ophthalmology department without need to involve the general practitioner’
‘The biggest failure in the system is the inability of general practitioners to recognise it and their misdiagnosis’
‘Hospital access by request should a worry arise unexpectedly’
‘Diagnosis needs to be a lot quicker—more specialists need to be assigned’
Theme 3:
the need for more information
Questions we have answers to: patient education and modifiable risk factors.
‘How can patients self-identify (recurrence of infection)?’
‘What are the risk factors and why?’
‘I’ve never explored or had it explained to me why I got the infection’
‘Are there any lifestyle factors that could be avoided to prevent recurrence?’
‘People need to ensure they are not causing or exacerbating risk factors.’
‘The possibility of resistance to treatment and how to deal with it should be analysed, and the information made available to patients.’
‘I would like to know how to advise others to prevent them suffering the same infection.’
‘I think it is also important to support the patient emotionally.’
‘Is it something you catch or is it something already in your system?’
Questions we are still looking into: Setting the research agenda
‘Can it go from one eye to the other?’
‘If long term treatment will reduce a recurrence happening again?’
‘(what is the) likelihood of complications, the effectiveness at preventing further recurrences and the necessary duration of treatment?’
‘What are the risks of long term treatment?’
‘What can be done to improve outcomes where there has been a late diagnosis and damage has been done?’
‘Why has (failure to treat the infection) taken place?’
‘How quickly does catastrophic blindness happen?’
‘Establishing whether prolonged treatment causes resistance and therefore optimal treatment duration.’
  • Quotes are grouped into three themes: controlling symptoms, access to the ophthalmologist and the need for more information.

  • HSK, herpes simplex keratitis.