New research from the Save Sight Institute, The University of Sydney and the Sydney Eye Hospital has revealed the effects of keratoconus on patients’ lives, as well as their experiences with different treatments.
While there has been extensive research and development into the management of keratoconus, patient perspectives on living with the condition have not been fully understood.
The results of a qualitative study entitled, ‘The Impact of Keratoconus on Quality of Life’, have been published in the latest issue of Nature-Eye, the official journal of the Royal College of Ophthalmologists.
In the study, patients described how their lives were affected by the condition, with some responses surprising the authors, Mr Leo Fan, Dr Himal Kandel and Professor Stephanie Watson OAM.
“The conversations I had with patients in this study highlighted to me that their condition goes far beyond just the chair in my clinic. Patients described to me how they felt on dates, navigating their careers, and how their diagnosis affected their overall path in life,” lead author and interviewer, Fan, said.
Patients interviewed were at various stages of their condition, ranging from those who did not require glasses, contact lenses, or surgery to others who had undergone multiple corneal transplants.
In the study, patients recounted how keratoconus affected their ability to drive, relationships, careers, enjoyment of life, and finances. They detailed the positive and negative experiences when seeking help for their condition.
Issues with access and cost of treatment were identified as prominent concerns.
The benefits of different treatments such as surgery in improving quality of life were also highlighted.
Prof Watson, head of the Corneal Research Group who directed the study said: “It’s important for surgeons to understand not just the technical aspects and outcomes of a procedure, but the wider benefits patient’s will have to their lives, it’s great to see the reassurance that surgery such as cross-linking provides to patients.”
Dr Kandel, senior researcher added: “In keratoconus, some studies have explored the impacts on visual functioning and symptoms. This study found that other domains of quality of life such as socio-emotional and economic impacts were equally, or in some cases, more important domains of quality of life.”
“The findings will help us create a tool that helps clinicians determine the impact of keratoconus on all quality of life domains and the benefits of treatments in everyday practice.”
The researchers also hope these findings will help clinicians understand the extent to which keratoconus and its treatment affect patient lives, and serve as evidence to advocate for improved funding and access to treatment.
More reading
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