Impacts of keratoconus on quality of life: a qualitative study

Abstract

Abstract Background/Aims To identify the domains of quality of life (QoL) in people with keratoconus. Methods Semi structured in-depth in person and telephone interviews were conducted with participants diagnosed with keratoconus and recruited from the Sydney Eye Hospital, Sydney, Australia. Thematic analysis of interview content was conducted using inductive and deductive processes. Data was collected until thematic saturation was obtained. Results 33 patients with keratoconus with median age 37 (range 18 to 65) years and majority male (n = 25; 75.8%) were interviewed and a total of 2551 quotes coded. Thematic analysis resulted in 7 broad themes, Driving (199 references), Career (259 references), Symptoms (647 references), Enjoyment (149 references), Relationships (250 references), Financial (104 references) and Healthcare (881 references). Most references described a negative relationship between keratoconus and these 7 domains. The diverse QoL issues expressed included frustration with treatment effectiveness, fear of disease progression, inconvenience with contact lenses, forced career changes and job loss, cost of contact lenses, and feelings of isolation and discrimination. Themes and subthemes described a complex and varied relationship between keratoconus and QoL. Conclusion Severe quality of life impairment was experienced by keratoconus patients despite treatment. Keratoconus diminishes various aspects of individual’s QoL. Therapies able to improve QoL are still needed for keratoconus.