Changes in the quality-of-life of people with keratoconus

PURPOSE: The Collaborative Longitudinal Evaluation of Keratoconus Study (CLEK) previously showed that people with keratoconus report significantly impaired vision-related quality-of-life (V-QoL), as measured on the National Eye Institute Visual Function Questionnaire (NEI-VFQ), similar to that of people who have severe macular degeneration. For this study, we evaluated changes that occurred in V-QoL over seven years of follow-up. DESIGN: In this prospective cohort study of 1,166 participants followed up for seven years, we estimated change in V-QoL by projecting the slope of a minimum of three reports on 11 scales of the NEI-VFQ. Correlation with clinical indicators was evaluated, and differences were assessed between those who had clinically signifi- cant changes in clinical factors and those who did not. Logistic regression was used to assess factors associated with a decline in 10 points or more in a scale score over seven years. RESULTS: All scales showed modest decline except ocular pain and mental health. Baseline factors were not associated with longitudinal change in NEI-VFQ scores. A 10,letter decline in high-contrast binocular visual acuity or a 3.00-diopter increase in corneal curvature were asso ciated with significantly larger declines in V-QoL. In multivariate analysis, these factors also were found to be associated with a 10-point decline in NEI-VFQ scale scores. CONCLUSIONS: Keratoconus is associated with sig. nificantly impaired V-QoL that continues to decline over time. For a substantial plurality of patients, these declines are significant.