Severe impairment of health-related quality of life in patients suffering from ocular surface diseases

Aims: To evaluate health-related quality of life (HRQoL) in French patients suffering from ocular surface diseases (OSDs). Background: Specific instruments exist in the OSD area, but they do not comprehensively cover all domains of HRQoL. Recently, the OSD-specific questionnaire (OSD-QoL (R)) was developed to address this need. Methods: The OSD-QoL includes 28 items divided into seven dimensions: Daily activities, Difficulties with work and handicap, Giving up make-up, Acknowledgement of the disease, Acceptance of the disease, Fear for the future and Emotional well-being. The OSD-QoL was administered and completed by 214 French patients with OSDs. Results: The mean scores of all OSD-QoL dimensions showed impairment, particularly Acknowledgement of the disease, Giving up make-up and Fear for the future; 88.4% of patients thought that their eye problems were not acknowledged by people, 55.7% gave up make-up, and 53.9% feared they were incurable. Dimension scores differed according to patient characteristics; particularly, the more severe the ocular disease, the lower the scores of most of the OSD-QoL dimensions. Physical and psychological disability levels also had an impact on the dimension scores. Conclusion: OSDs have a detrimental impact on patients' HRQoL, that the specific OSD-QoL questionnaire was able to characterize. The level of impairment varies according to the severity of the disease and physical and psychological disability. The clinician's perception of their disease does not completely reflect the patient's perception of their disease.