Purpose
There is a paucity of information concerning the level of uveitis patients’ understanding of their disease. The purpose of this study was to establish how much uveitis patients know about their condition and to investigate the contribution of demographic factors to that knowledge.
Methods
A self-designed questionnaire, comprising 20 questions about uveitis, was distributed to 200 consecutive patients attending a UK tertiary referral Uveitis clinic. It was initially trialled by four uveitis patient groups and modified according to their comments. The questionnaire requested demographic details (age range, gender, ethnicity, residence postcode) and required responses to uveitis-specific questions (definition, epidemiology, causes, symptoms, complications, treatment) using a three point Likert scale. Postcode was used to determine level of social deprivation using Index of Multiple Deprivation 2007 (IMD 2007) and participants divided into IMD 2007 score quintiles. Univariate analyses (Mann-Whitney and Kruskal-Wallis tests) and multivariable logistic regression were performed
Results
Of the 200 patients, 165 (83%) provided sufficient data to be included in the analysis. Of all respondents, 62% were female, 71% aged >40 years and 67% of white ethnic origin, with 41% having been under the care of a uveitis specialist for >10 years and 72% attending ≥3 clinic appointments in the preceding 12 months. Median questionnaire score (out of 60) was 27 (interquartile range [IQR] 15). No patients answered all questions correctly; only 39.5% got more than 10 questions correct but 80.5% knew the meaning of uveitis. Using univariate analyses females scored significantly higher than males (30 [15] versus 24 [15] p=0.001), but there was no difference according to age, ethnicity or social deprivation quintile, nor the duration patients had been under ophthalmic review or number of clinic attendances in the preceding 12 months. Multivariate analyses determined no independent influence of any of the factors on uveitis questionnaire score.
Conclusions
Uveitis patients’ understanding of their condition is poor. No independent influence of any demographic factor, or historical or recent clinic attendance experience, on uveitis questionnaire score was observed. Strategies must be devised to augment uveitis patient understanding in order to increase satisfaction, improve treatment adherence and subsequently enhance clinical outcomes.