Do Patients With Keratoconus Have Minimal Disease Knowledge?

Purpose: To assess whether Swiss adult citizens diagnosed with keratoconus have the minimal knowledge that a corneal specialist would expect they should have. Methods: Experts defined the "minimal keratoconus knowledge" (MKK) with respect to definition, risk factors, symptoms, and possible treatment options of keratoconus. A survey was performed in 167 patients with keratoconus [mean age 38.8 years (SD 13.9), 77.7% male] in 5 specialized institutions. Of each participant, salient clinical characteristics, highest educational level, paramedical background, and specific health experience with keratoconus in the social surrounding were obtained. We calculated the proportion of MKK and examined whether patients with higher education and greater disease experience would perform better than those from other groups in multivariate analyses. Results: No single citizen reached 100% MKK. The mean MKK was 35.2%, and the range was 0% to 76.2%. Participants with a university degree had only a moderately higher MKK [+8.7% (95% confidence interval: 4.4-13.0); P < 0.001]. Per age decile, the MKK declined by 3.1% (95% confidence interval: 1.2-4.9), P = 0.002. Disease duration, severity of keratoconus in Kmax values, and history of surgical treatment did not significantly increase MKK. Surprisingly, MKK was also lower in patients with a paramedical background [-6.3% (-14.1 to 1.4); P = 0.107]. Conclusions: This sample of Swiss patients with keratoconus did not know more than a third of the MKK. We found a little difference within various subgroups. There is a substantial mismatch between caregivers' expectations of patients' knowledge and patients' active knowledge regarding their condition. This may lead to an inefficient care delivery and misunderstandings.