The many impacts of keratoconus on patients’ lives
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.
New research from the Save Sight Institute, The University of Sydney and the Sydney Eye Hospital has revealed the wide effects that keratoconus has on patient’s lives, as well as their experiences with different treatments.
The results of a qualitative study titled “The Impact of Keratoconus on Quality of Life” have been published in the latest issue of Eye, the official journal of The Royal College of Ophthalmologists. In it, patients described the many different facets of their lives that 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.
The impacts of keratoconus extend beyond the clinic, according to researchers from the Save Sight Institute's Corneal Research Group. Photo credit: The University of Sydney.
Patients interviewed had a wide variety of stages of their condition, with some not needing any glasses, contact lenses or surgery, to others having experienced 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 experiences they had both positive and negative, with seeking help for their condition. Issues with access and cost of treatment were prominent concerns.
The benefits of different treatments such as surgery in improving quality of life were also highlighted.
The study was directed by Professor Watson, who heads the Corneal Research Group at the Save Sight Institute. She shared, “It’s important for surgeons to understand not just the technical aspects and outcomes of a procedure, but also the wider benefits patients will have to their lives. It’s great to see the reassurance that surgery such as cross-linking provides to patients.”
“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.” says Dr Kandel, a senior researcher with extensive experience in quality of life studies, pointing out the varied domains discovered in this study.
“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 that these findings will help clinicians understand the extent to which keratoconus, and its treatment affects patient lives, and serve as evidence to advocate for improved funding and access to treatment.
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