Understanding the quality-of-life impacts of ocular surface disease.

Abstract

Purpose: This study aimed to explore the lived experience of adults with different types of ocular surface disease (OSD) to understand their quality of life (QoL) impacts.

Methods: Lived experiences of participants diagnosed with aqueous deficient dry eye disease (DED), meibomian gland dysfunction (MGD), anterior blepharitis, neuropathic corneal pain (NCP), ocular surface involvement of autoimmune disease and contact lens discomfort (CLD) were explored using in-depth, semi-structured interviews. Participants were recruited from specialized dry eye clinics in Australia, United Kingdom, as well as online support groups. Thematic analysis of interviews was performed to identify key QoL themes.

Results: Sixty-two participants participated in an in-depth interview (median age: 46 years, range 22-78). There were 16 male participants (median age: 38.5 years; range: 23-74) and 46 female participants (median age: 50 years; range 22-78). The distribution of participants by condition as follows: DED - 9, MGD - 12, anterior blepharitis - 8, NCP - 8, ocular surface involvement of autoimmune disease - 14, and CLD - 11. Thirteen major QoL themes emerged. The most significant impact observed was on the emotional wellbeing with participants describing feelings of annoyance, depression, frustration, reduced self-confidence, worry, and anxiety related to their condition. Many expressed concerns about the chronic nature of OSDs, characterised by persistent symptoms and lifelong treatment. Economic impact extended beyond direct medical expenses, affecting employment, and productivity. Participants also described difficulties with daily activities, driving and mobility. Coping strategies included adjustments to their daily routine and environment.

Conclusion: OSDs significantly impact multiple aspects of an individual's life. These findings lay the foundation for developing a comprehensive and technologically advanced patient reported outcome measure (PROM) tailored to individuals with OSDs. Addressing these QoL concerns through targeted interventions and policy updates will be crucial in enhancing patient care and optimizing disease management.