Dr Maria Cabrera chats with Dr Himal Kandel (@kandelhimal), a Research Associate at the University of Sydney, Save Sight Institute about the importance of a quality-of-life questionnaire in keratoconus. Measuring quality of life, an abstract term, is a bit more complex than measuring length or weight. But a quality-of-life questionnaire can allow us to measure it in a scientific way to find out how keratoconus treatments and disease progression are impacting people’s quality of life.
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Maria Cabrera (MC): Have you heard about an eye condition called ‘keratoconus’?
Did you know that keratoconus is mainly diagnosed in the adolescence and results in a significant vision impairment?
Have you heard about quality-of-life questionnaires in medicine?
By the end of this podcast, you’ll know…
· What keratoconus is, how to diagnose it and some treatments.
· What a quality-of-life questionnaire is, and
· How researchers use this questionnaire to assess quality of life and treatment outcomes.
First, I will give a brief introduction about keratoconus and then I will chat with Dr Himal Kandel, a Research Associate at the University of Sydney, Save Sight Institute, who will tell us about quality-of-life questionnaires in keratoconus.
I am Maria Cabrera-Aguas. A Researcher at the University of Sydney, Save Sight Institute. Welcome to the Sydney Eye podcast!
Before we kick off our episode today, I want to say that I am very grateful to you for the positive response to this podcast. In the last month, about 50 people told me that they have shared the podcast with family, friends and colleagues. I was so happy to hear this because my goal is to educate everyone about eye conditions and share the research and the latest news on eye health. Please, keep sharing this podcast with family, friends, and colleagues. Also consider subscribing to the podcast to receive a notification when a new episode is released. You can find us on Spotify, Apple Podcasts, Google Podcasts, Stitcher and YouTube.
Keratoconus means cone-shaped cornea. It is a disease of the cornea. But first, let’s remember that the cornea is the transparent front part of the eye, and it is normally round. This disease results in thinning of the central part of the cornea. As it progresses, the normal eye pressure causes the round shape of the cornea to deform, and an irregular cone-like bulge develops resulting in significant visual impairment.
The onset of this disease occurs between the ages of 8 and 45. A recent Australian population-based study reported that 1 in 84 young adults has keratoconus. One of the highest reported in the world. It is a progressive disorder affecting both eyes, although only one eye may be affected initially. Clinical signs vary depending on the severity of the disease. Initial symptoms are blurred vision and distortion of vision. As the disease progresses, the patient may suffer of increased blurring and short-sightedness, light sensitivity, halos and flaring around light sources that make difficult driving at night. Keratoconus is usually diagnosed at clinical examination under slit-lamp, corneal topography or with other instruments. Treatments include wearing glasses or contact lenses in early stages and to maintain vision long term. In severe cases, surgeries such as crosslinking or corneal transplantation may be needed. All these treatments affect the quality of life of the patient to some extent.
Some tests such as visual acuity, refraction and corneal topography are available to assess the impact of keratoconus and treatment outcomes; however, quality of life cannot be directly measured as visual acuity for example. Therefore, special questionnaires also called patient-reported outcome measures have been created to measure quality of life in keratoconus.
To talk more about this type of questionnaires, I have invited Dr Himal Kandel who is a postdoctoral Research Associate at the University of Sydney, Save Sight Institute. Himal studied Optometry in Nepal. Later, he pursued a Master of Public Health for Eye Care at the London School of Hygiene and Tropical Medicine in the UK and completed his PhD at Flinders University in Adelaide.
Welcome Himal and thank you so much for joining us in our shown today.
Himal Kandel (HK): Thank you for having me, Maria.
MC: Well Himal, before talking about quality of life questionnaires in keratoconus, can you tell us what is a quality-of-life questionnaire is and what is its purpose?
HK: Sure, quality of life questionnaire is a tool that allows us to measure different aspects of quality of life. For example, if you want to know the impact of an eye disease on different aspects of quality of life, or if you want to know the benefits of treatments on quality of life, the quality-of-life questionnaire allows us to do so. Measuring quality of life or happiness or love this kind of abstract constructs is a bit more complex than measuring length or weight. But ah, high quality questionnaire can allow us to measure them in a scientific way.
MC: for keratoconus, for example, how did you and your team designed the questionnaire, because I suppose is not the same if you have other kind of eye conditions?
HK: for keratoconus, we first conducted a comprehensive, systematic review to identify what questionnaires, we also called them person reported outcome measure what are available. And then we found that Keratoconus Outcomes Research Questionnaire was one of the best questionnaires available for keratoconus. This was originally developed by Professor Konrad Pesudovs and his team, but the way these questionnaires are developed is first of all, the quality-of-life issues are identified through in-depth consultation with patients and experts in keratoconus, and then a pilot questionnaire is developed from those issues and then later validated, and the final form is then developed. So this is the standard process, how it is developed and the Keratoconus Outcomes Research Questionnaire has also followed the same standard process.
MC: how did you evaluate this questionnaire it in our context? Was it a Sydney context or Australia wide?
HK: yes, so so since we found that Keratoconus Outcomes Research Questionnaire was one of the best for keratoconus, and we use it in our Save Sight Keratoconus Registries, a database of patients with keratoconus. So we use it in the registry to collect quality of life data from basis routinely. But when a questionnaire is used in a certain population, it has to be validated first, and we have to make sure that it is working well. So we did Rasch analysis which is a modern psychometric method to evaluate the performance of the questionnaire. So we did Rasch analysis and we found that it worked really well.
MC: But how do you how do you conclude it work well, based on what parameters or what results?
HK: This is a very good question. Rasch analysis allows us to evaluate our number of properties of a questionnaire in terms of how it is working. So as I told you earlier, quality of life is a complex construct, but it has to a measure if we want to measure anything, it has to follow certain measurement principles. So so Rasch analysis what it does is it evaluates whether those measurements criteria are followed, are properly followed or not.
MC: So how long is this questionnaire? And how long does it take for a patient to complete the questionnaire?
HK: the Keratoconus Outcomes Research Questionnaire, it has 29 items 29 questions with four to five, four response options, since the questions are worded in a very simple way and then same response options are used for all questions, we found that it only took on average 2 to 3 minutes filling out a questionnaire. So it is pretty quick.
MC: Okay, So for example, what questions do you have in this questionnaire?
HK: There 18 questions measuring one expect of quality of life called activity limitations. That is day to day functioning, so those questions measure how the person is doing in day-to-day functioning or how keratoconus is affecting their day-to-day functioning. And there are other 11 questions on symptoms about what is the status of symptoms like glare, dry eye, that kind of thing's so they're all together there 29 items measuring two aspects of quality of life.
More on quality of life in keratoconus up next…
But first, we have a question for you, the listeners. Have you heard about the quality-of-life questionnaire before? Email us at email@example.com or share on Twitter or Instagram with the hashtag sydeyepod, that’s Hashtag S-Y-D-E-Y-E-P-O-D.
MC: well Himal, you know that patients sometimes are asked to complete many forms in the clinic. What would be the advantages for patients to complete this questionnaire?
HK: There are number of advantages of using the quality-of-life questionnaire and having the quality-of-life data. Just like other clinical tests that visual acuity or refraction. It's important to find out how diseases impacting on persons quality of life. After all, main aim of health care whatever we do in health care is to improve patient’s quality of life. So this measuring quality of life should be part of comprehensive outcome measurement. And it is also an opportunity for patients to be involved in their own care. And it is really important to understand patient’s perspectives is what we have found that sometimes patients and clinicians’ perspectives can differ and the questionnaires can we fill that gap and when we can identify the patients’ needs using the validated questionnaires and it can lead to new treatments as well. So there are a number of advantages of using this quality of life questionnaire.
MC: in what type of health care settings can patients access to these questionnaires?
HK: There's a very good question again. I think in an ideal situation, just like any other clinical test is important to measure or collect quality-of-life data. But it obviously doesn't happen in the real real world, but at Save Sight Keratoconus registry, we most many clinicians collect quality of life data in every clinical visit. So there are different ways. It can be done in our registry. They can fill the patients can fill out the questionnaire, when they're waiting to see their doctors, in paper or in iPad. That's how general it is done. But now they can also get a link and complete it in their own device. Yeah, there are various ways, depending up their circumstance, depending upon the situation that different ways of filling out the questionnaire. It is self-administered so patient complete themselves. But the questions can be administered in different ways.
MC: there are some good options here. But I suppose at this point only research health settings can provide this to a patient, right?
HK: That's right. So those who I mean our Save Sight Keratoconus registry probably will talk about the registry in the latter episodes. But our registry is collecting the real-world data in the clinics and which is the data is used for both research as well as for clinical practise. So in at Save Sight keratoconus registry, we collect quality of life data and it has been very useful because clinicians can compare what quality of life aspects have been affected. It is not just for research purpose, but also for a clinical decision making. They can look at OK, compared to the last clinical visit. How is the person doing in a different quality of life areas, so it has already been they have already started using it for clinical purposes well, but not all clinicians at the moment use quality of life questionnaire our quality-of-life data to inform their clinical decision making.
MC: okay, so do you think patients could ask their ophthalmologist or optometrist if they have these questionnaires? or do you think these ophthalmologists or optometrists will always provide these questionnaires to patients?
HK: Usually it is the clinicians ophthalmologists or optometrists who administers the questionnaire to patients. But if patients are well informed and if they understand the advantage of filling out the quality-of-life questionnaire definitely they can be the conversation started. And in that way, clinicians will will, I think, will be we will be forced to use the quality-of-life questionnaire. I think it is a good starting point as well. So I would definitely because that is when
MC: to finalise, do you think that the ophthalmologists or optometrists should incorporate this questionnaire into the clinical practise, that will be the aim in the future to also have them in their practise?
HK: Yes, this patient reported outcome measurement, our quality-of-life measurement is an emerging field, and it is growing very rapidly. So in the near future, we can expect more clinicians, more optometrists, ophthalmologists using the quality of life tools in their routine clinical practise. and definitely I would be very happy if it is sooner than later. But it's going to happen. And many regulatory bodies like Food and Drug Administration (FDA) and other other regulatory bodies are also promoting recommending the use of the quality-of-life data in the routine clinical practise as well. So it's definitely happening in the future.
MC: well, Himal thank you so much for sharing this project with us today. If people want to contact you, what would be the best way to do it? via email or for social media?
HK: Either would we fine on social media I'm on Twitter and LinkedIn. So any, anyway is fine. I'm very very approachable, I think.
MC: See you next time.
HK: Thank you so much
MC: to recap, keratoconus is an eye condition in which the cornea has a cone-like shape as a result of thinning of the cornea. Normally it is diagnosed in the adolescence and is progressive until the age of 40. Initial symptoms are blurred vision and distortion of vision. Keratoconus is usually diagnosed at clinical examination under slit-lamp or other instruments. In early stages, glasses or contact lenses can correct the distortion in vision. Surgeries such as crosslinking or corneal transplantation may be needed in severe cases. The progression of the disease and its treatments affect the quality of life of the patient. Vision acuity, refraction or corneal topography assess the impact of keratoconus but not the impact in the patient’s quality of life. TheKeratoconus Outcomes Research Questionnaire has been used to measure quality of life in patients with keratoconus. It is a short and self-administered questionnaire available in clinics enrolled in the Save Sight Keratoconus registry for example Sydney Eye Hospital. If you are an eye health professional and would like to enrol in this registry send us a email and the registry’s staff will contact you.
I am Maria Cabrera-Aguas, thanks for listening to the Sydney Eye Podcast. If you haven’t yet subscribed to this podcast you are invited to do so, to receive a notification when a new episode is released. Please, keep sharing this podcast with family, friends, and colleagues.
If you have any questions, comments or suggestions please send them to firstname.lastname@example.org and connect with us on Twitter @CabreraMarie,
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Will see you next time. Have a good one!