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Thursday / November 7.
HomeminewsKeratoconus QoL More Than Just Good Vision: Study

Keratoconus QoL More Than Just Good Vision: Study

New Australian research has put a human perspective on living with keratoconus, with patients reporting that the condition has impacted their careers, their finances, ability to drive… and even their dating lives.

The qualitative study, published in Eye,1 involved interviews with patients with varied stages of keratoconus; some not needing glasses, contact lenses or surgery and some who had multiple corneal transplants.

The research was conducted by the Save Sight Institute, the University of Sydney, and the Sydney Eye Hospital.

“The conversations I had with patients in this study highlighted to me that their condition goes far beyond just the chair in my clinic,” said lead author and interviewer, Mr Leo Fan.

“Patients described to me how they felt on dates, navigating their careers, and how their diagnosis affected their overall path in life.”

He said multiple participants discussed the impact of keratoconus on relationships.

“I had one man describe to me the thought process that they had… ‘So, I’ve met this new person. Do I tell them I have this diagnosis or not? Will they understand it? Will they look at me a bit funny?’

“Even things like, ‘Oh, they’ve booked an evening date, but… my eyes will be so tired’.  Things like preferring a dimmer lit environment when meeting someone just because they were self-conscious about the redness of their eyes,”  Mr Fan said.

VISION QUALITY VS QUALITY OF LIFE

Mr Fan said another interesting theme to emerge from the research was that quality of vision didn’t necessarily mean quality of life scores were high.

“There’s a sense that despite the fact that their vision on paper might look quite good, they still might feel unsafe driving, they still might have a lot of difficulty with other symptoms like discomfort around their eyes and irritation.”

Patients often live in fear of infections and further injury to the eye, he told mivision.

“Those are some of the examples of why looking at just the patient’s vision doesn’t always mean that they’re still having a good quality of life.”

LOOKING AT THE WIDER BENEFITS

Professor Stephanie Watson OAM, head of the Corneal Research Group who directed the study, said it was “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 crosslinking provides to patients.”

Senior researcher Dr Himal Kandel said, “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,” added Dr Kandel.

BEYOND THE CHAIR

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.

He urged eye health practitioners to provide their patients with the opportunity to express their concerns.

“It’s good to think about the context in which the condition’s happening. If they’re coming in and they’re school aged, they might be thinking of what career they’re going to pursue in uni.  They might be thinking of dating.

“I just ask them more broadly, ‘How do you feel about this? What parts of your life is this affecting?’. This sort of approach can be quite good to see if what you are doing is helping them beyond just making their vision better.”

He also stressed the importance of referral to support services.

“One of the themes that came up with multiple participants was the fact that it’s a hard-tounderstand condition. A lot of people really can’t understand why someone can’t see… They assume that once you put the glasses on, the problem is fixed.

“Having someone who understands or having a network of people who understand is really important,” Mr Fan said.

Reference

  1. Fan L, Kandel H, and Watson SL. Impacts of keratoconus on quality of life: A qualitative study.   

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