December 2022

Cross-linking improves the quality of life of people with Keratoconus: A cross-sectional and longitudinal study from the Save Sight Keratoconus Registry

Himal Kandel, Jern Yee Chen, Srujana Sahebjada, Elaine W Chong, Steven Wiffen, Stephanie L Watson


Purpose: The purpose of this study was to comprehensively evaluate the patient-reported quality-of-life (QoL) outcomes after corneal cross-linking for keratoconus.

Methods: This Save Sight Keratoconus Registry study used cross-sectional and longitudinal designs. For the cross-sectional study, 532 patients with keratoconus (mean age 30.9 ± 11.9 years; 31.6% female) completed the Keratoconus Outcomes Research Questionnaire (KORQ) and 343 patients with keratoconus (mean age 28.3 ± 10.7 years; 32.7% female) completed the Impact of Vision Impairment (IVI) questionnaires. Similarly, for the longitudinal study, 39 patients (mean age 24.2 ± 8.4 years; 23.1% female) completed the KORQ and 16 patients (mean age 27.9 ± 17.1 years; 50.0% female) completed the IVI questionnaire before and after 6 months of cross-linking. The QoL data were analyzed using the Andrich Rating Scale Model of Rasch analysis.

Results: For both cross-sectional and longitudinal studies, the KORQ and IVI scales demonstrated satisfactory psychometric properties [ordered and well-spaced categories, variance explained by the measure 52%-73%, person separation index 2.4-3.9, and fit statistics 0.05). The longitudinal study showed that cross-linking was associated with improved activity limitation, symptoms, and emotional scores.

Conclusions: The KORQ and IVI are psychometrically robust tools to evaluate the QoL outcomes of corneal cross-linking. Cross-linking is associated with improved activity limitation, symptoms, and emotional status.