Table 4.
Themes and quotes reported by patients with keratoconus (n = 33).
| Code | Quote (Context – Gender, Age, Treatments) |
|---|---|
| HEALTHCARE | |
| H1 – Unprofessional treatment | “The optometrist kept telling me that my prescription was changing every few minutes, and she started getting really annoyed at me. I thought she was very unprofessional” (Male, 40, Glasses) |
| H2 – Disagreement with doctor over diagnosis | “I had to basically argue with her that I have actually had these scans done before and I’ve had, um, eye professionals, I’m not sure of correct terminology, explain this condition, diagnose this condition, monitor this condition. And yeah, that was just a very negative outcome” (Male, 26, Glasses) |
| H3 -Appointments have a long waiting time | “The system itself is a little bit frustrating to deal with. Like, we go in there. We wait quite a long time.” (Female, 21) |
| H4 – Hospital environment is depressing | “I felt very sad and sorry for myself, um, going into the hospital, the, the, the first time. Um, And, you know, “why is this happening to me?” And, and all that. Cause I’d never been to hospital before” (Male 51, Rigid contact lens) |
| H5 – Fear at initial diagnosis | “, When I first got diagnosed, it did, you know, I was quite scared.” (Male, 65, Glasses, Other surgery)_ |
| H6 – Fear due to not understanding condition | “It scared me a bit. I didn’t know anything about keratoconus.” (Male, 65, Glasses, Other surgery) |
| H7 – Distraught at initial diagnosis | “I was first diagnosed with keratoconus about, um, about one and a half years ago, and yeah, felt, I felt distraught” (Male, 39, Glasses, Keratoplasty) |
| H8 -Spectacles do not fully address symptoms | “I also didn’t know what the point of wearing them was because I couldn’t notice any difference in my vision” (Male, 25, Glasses, Keratoplasty) |
| H9 – Contact lens falls out of eye easily | “They were irritating, I was tearing all the times and my nose was blocked, it was painful in the eye, and they were popping out” (Male, 43, Scleral contact lens) |
| H10 – CXL is a scary experience | “It was terrifying. Um, I was aware that I was going to be awake during it, but I didn’t realize how scary that was actually going to because I’ve never had any type of surgery before” (Female, 18, Glasses, Crosslinking) |
| H11 – Keratoplasty post-operative care requirements | “it’s a little bit of a life changing thing with being like sterile. You have to wash your hands, everything, like all the time.” (Male, 23, Glasses, Crosslinking, Keratoplasty) |
| H12 – Fear of ocular trauma after surgery | “I was very paranoid about anything getting in contact with my eyes, so they didn’t instruct me, but I still went into this habit of just wearing things over my eye,” (Male, 28, Keratoplasty) |
| H13 – Wish for a cure | “I think the saddest part was that finding out there was no cure. Yeah, it was heartbreaking,” (Male, 37, Keratoplasty, Other surgery) |
| H14 – Keratoplasty is exciting | “So there wasn’t any anxiety or fear around going into surgery. I was actually kinda excited to be frank to actually have something done about my eye.” (Male, 28, Keratoplasty) |
| H15 – Keratoplasty improves QoL | “It’s allowed me to get my license… allowed me to have a bit more of a normal life. Having a license and yea I don’t regret it, If I had to go back in time, I’d do it all over again” (Male, 38, Glasses, Crosslinking, Keratoplasty) |
| H16 – Crosslinking is reassuring | “I don’t really worry about it as much now cuz I do know that I’ve had a cross-linking surgery. I know how it’s, I know that it’s gonna help in the long run.” (Female, 18, Glasses, Crosslinking) |
| H17 – Glasses improve vision | “Wearing glasses, all of the symptoms kind of just go away and your vision goes back to normal again” (Male, 26, Glasses) |
| H18- Contact lens improves QoL | “ I can function, I can drive, I can work, I can do most things that I need when I’ve got the lenses on.” (Male, 65, Glasses, Other surgery) |
| SYMPTOM | |
| S1 - Blur | “I can’t see it once I come about, say maybe like 10 or 15 meters, then I can see it properly.“ (Male, 52) |
| S2 – Pain | “Oh, look, even my eyesight became quite blurred and, and, um, And incredibly painful when, well, I wouldn’t say incredibly painful, but quite an-annoyingly painful” (Male, 65, Glasses, Other surgery) |
| S3 - Headaches | “I can’t be on my phone or technology much, especially when studying, just cuz I get headaches.” (Female, 18, Glasses, Crosslinking) |
| S4 – Diplopia | “I’ll have like this double vision where the image that I’m looking at, whatever I’m looking at, has like an after image effect above that object.” (Male, 28, Keratoplasty) |
| S5 – Peripheral vision | “Like you just tend to realize that you kind of. Um, live in, in like a cone. Like you, you’re very dependent, especially me, just with my left eye. I’m very dependent on where my left eye is focusing on.” (Male, 23, Glasses, Crosslinking, Keratoplasty) |
| S6 – Irritation | “I think later on, the actual eyes started hurting me. Um, It was becoming red and irritated.” (Male, 37, Keratoplasty, Other surgery) |
| S7 – Difficulty with eye makeup | “if you look close up into a mirror to try and do the eye makeup, it’s so blurry. But then if you’re too far, it’s also too blurry.” (Female, 32, Glasses, Crosslinking, Intrastromal Corneal Ring Segments) |
| S8 – Self consciousness over red eyes | “I’m extremely self-conscious, even making eye contact with people..” (Female, 35, Rigid lens) |
| S9 – Futility | “The kind of, the thought that it’s never going to get better sucks, and that’s not great.” (Male, 26, Glasses) |
| S10 – Inconvenience with coping devices | “You’ve gotta stuff around for 10 or, 5 or 10 minutes, You got to do things like that, Even though I have mobility aids for that sort of thing, you’ve gotta carry that with you. And that’s stuff you’ve got to cart around with you and that becomes a problem” (Male, 62, Glasses, Other surgery) |
| CAREER | |
| C1- Falling behind in class | “There’s been many times where I feel like I’m falling behind because I can’t even read the board” (Female, 18, Glasses, Crosslinking) |
| C2 – Ceasing studies | ““I always used to think that, “Oh, if I didn’t have this condition, I would be driving, I would be doing this, I would be doing that.” I wouldn’t probably, you know, have stopped all my studies” (Female, 21) |
| C3 – Difficulty with whiteboard | “I would find it hard to read what was on the board” (Male, 25) |
| C4 – Teachers not understanding | ““One time I took my phone out to take a photo of this man’s tiny, tiny writing. No one could read it. And he took my phone for almost four days.” (Female, 18, Glasses, Crosslinking) |
| C5 – Withdrawing from university | “I got to a point where I ended up just withdrawing from uni just because I didn’t feel like I could properly analyze the data to finish off the thesis.” (Female, 32, Glasses, Crosslinking, Intrastromal Corneal Ring Segments) |
| C6 – Failing medical standards | “I did have an interest back in the day to become a pilot or a helicopter pilot. But, um, with the vision impairment, obviously that can never happen” (Male, 25) |
| C7- Regret at not pursuing career | “Even now, you know, uh, at 50, I still regret that I didn’t get to do the career I ultimately really wanted to do.” (Male, 49, Glasses, Keratoplasty, Other surgery) |
| C8 – Career change | “It was a great job. I loved it. But yeah, look, you can’t… What are you gonna complain about? It is kind of one of those things that you just gotta deal with. It’s part of life” (Male, 23, Glasses, Crosslinking, Keratoplasty) |
| C9 – Fear of career change following treatment | ““I suppose with the operation as well I suppose there’s that, uh, the thought of, “oh, do I have to change careers again after this operation?” Uh, you know, downgrade again to something else” (Male, 55, Glasses, Keratoplasty) |
| C10 – Fired due to keratoconus |
” I got fired, got let off, um, because yeah, my, my, my boss at the time was just saying like, “you know, I, I can’t have, uh, you, you are almost like a, a risk. To have onsite. Um, it’s dangerous.” (Male, 23, Glasses, Crosslinking, Keratoplasty) |
| C11 – Limited career progression | “I’ve done a lot of lateral transfers at work as opposed to moving up the chain just because I feel like with more responsibility, particularly at my company, like as you go up, you have a larger and larger budget to manage. And it’s those numbers and dealing with numbers that I worry about.” (Female, 32, Glasses, Crosslinking, Intrastromal Corneal Ring Segments) |
| C12 – Feeling incompetent at work | “Anyone else or anything else you would’ve thought “God easy-peasy”, you know, Cause you couldn’t see, you think you get frustrated, you get, um, annoyed. You feel incompetent.” (Male, 55, Glasses, Keratoplasty) |
| C13 – Moving closer to screens | “If I have to use a computer, my face is basically plastered up against the screen. And, um, I hate that because it looks stupid..” (Male, 28, Keratoplasty) |
| C14 – Self conscious at work | “I can’t have the screen too close to me in the office. Cause people probably think I’m really, really blind.” (Female 30, Glasses) |
| ENJOYMENT | |
| E1 – Stopping hobbies | “I used to like to do puzzles. I can’t do puzzles that much anymore. I stopped buying them.” (Male, 52) |
| E2 – Missing out on experiencing life | “I’ve been like living under a rock, like just seeing things and not the best kind of like light. And I’m also an artist. I like to draw and I like to paint and like, I just feel like I’ve been like left out.” (Female 30, Glasses) |
| E3- Cannot recognize teammates | “I will constantly pass the ball to the wrong person, the wrong team, and I simply cannot identify the players by their face or their, their overall stature or whatever.” (Male, 26, Glasses) |
| E4 – Limited confidence | “I used to be very good. At, at FPS games. And now I struggle, I struggle so much that in the last eight to nine months I haven’t jumped on. Cause I just don’t feel confident. Like the desire’s gone.” (Male, 50, Glasses) |
| E5 – Loss of passion for sport | “I was getting worse and worse, I just fell outta love and I just stopped doing it as well.” (Male, 23, Glasses, Crosslinking, Keratoplasty) |
| E6- Sadness at stopping hobbies | “I feel a bit up upset, but what can I do about it?You know?. Yeah. I can’t do nothing about it.” (Male, 52) |
| E7 – Discomfort during air flights due to contact lens | “catching flights is very difficult. The air on the flight, it’s very dry. I need to take the lens out, but then I also need to make sure that I time my, um, I make sure, I have to make sure the lens is back in” (Female, 35, Rigid lens) |
| E8 – Sadness at not being able to see kids succeed | “look, definitely upset me in relation to, uh, not being able to see my kids, uh, work clearly when they’re, they’re doing their things. That, that has impacted me um, terribly,” (Male, 49, Glasses, Keratoplasty, Other surgery) |
| E9 – Missing visual element of enjoyment | “It doesn’t do justice. Like if I go out and like I’m sight-seeing, so I was in Korea like a few months ago and I’m like, “it’s really pretty”. But like I would know that had I had perfect vision, I would, I’d be able to capture it better” (Female 30, Glasses) |
| E10 – Difficulty reading menu at restaurant | “when I go out with my friends, I cannot look at the menu to order anything.” (Female, 23) |
| E11 – Cannot read sheet music | “I used to play guitar quite a lot and I’d read off sheet paper, but now I can’t even look at sheet paper anymore, like right in front of my face cuz it’s just so blurry and like I’ve given up that the hobby” (Female, 18, Glasses, Crosslinking) |
| RELATIONSHIPS | |
| R1 – Isolation | “sometimes it would drain your motivation to go out and go to an event. Like could be a little thing like a birthday party or your friends invited you out, or maybe even a sport game or whatnot. You kind of just wanna, you know, lay down and close your eyes and not having to worry about anything.” (Male, 25) |
| R2 – Lack of Understanding | “I didn’t have my license, so they were like, “oh, when are you gonna get it, when are you gonna get it, your eyes are fine” (Male, 38, Glasses, Crosslinking, Keratoplasty) |
| R3 – Avoiding relationships | “Like I think initially, like, you know, I mentioned that I felt like it was a disability for me. So for a long time I avoided like, intimate relationships.” (Female, 32, Glasses, Crosslinking, Intrastromal Corneal Ring Segments) |
| R4 – Not developing friendships | “I’ve only been there for two years and I have some people who really want to be a friend and have drinks and do things outside of work, and I just can’t be bothered explaining my health history.” (Female, 35, Rigid lens) |
| R5 – Being seen as different | “If I have my laptop and I’m out having coffee, but I’m still working like, and I don’t have my glasses, people probably think I’m weird because I’m squinting and like struggling..” (Female 30, Glasses) |
| R6 – Self-conscious over appearance | “When someone looks at you closer into the eyes, they can see that round bit that’s been transplanted. I’ve had that a lot in the past.” (Male, 55, Glasses, Keratoplasty) |
| R7 – Experiencing discrimination | “She told me that, “oh, like, so you’re disabled?”. So I’ve been like, I felt discriminated many times.” (Female, 23) |
| R8 – Awkward interactions at work | “I, virtually until I’m up right in front of you, I will not be able to see your face. That also makes it very awkward in a lot of situations” (Male, 23, Glasses, Crosslinking, Keratoplasty) |
| R9 – Not discussing condition | “I don’t talk about it to no one. I have to be honest with you. Like, this is me personally though. Um, I don’t talk about it to no one. So, uh, I just keep it to myself, you know.” (Male, 37, Keratoplasty, Other surgery) |
| R10 – Conflict with partner | “And you know, my missus, she blows up about it all the time. I’ll be doing the dishes. And we, we hand clean all of our dishes and there’ll still be like little bits of like, you know, food and stuff that I just didn’t see” (Male, 23, Glasses, Crosslinking, Keratoplasty) |
| R11 – Feelings of guilt due to relying on partner | “I kind of feel bad in that sense that okay, let’s say if we wanna go somewhere, my partner takes most of the bill. Like I try and chip in as much as I can, but it’s really hard” (Female, 23) |
| R12 - Support from family | “I really am fortunate, uh, for my family’s understanding. As well as my social life’s understanding, uh, because they understand” (Participant 35) |
| DRIVING | |
| D1 – Conditions; Rain | “If we have like really rainy, dark cold day, then I’m not gonna go. Cause I don’t wanna drive.” (Female, 21) |
| D2 – Conditions; Night | “So during the day my vision is okay, but, um, trying to see at nighttime, it’s troubling and, um, I can’t see the road as well.” (Male, 39, Glasses, Keratoplasty) |
| D3 – Discomfort of driving | “I’m borderline. Like technically legal. Legally I can, um, but I, I would not feel comfortable with driving” (Male, 23, Glasses, Crosslinking, Keratoplasty) |
| D4 – Importance of driving | “But there’s other jobs that I’ve, I’ve, I’ve considered that I need to drive constantly and if I can’t drive, I can’t pursue those, those prospects.” (Male, 57, Glasses, Keratoplasty) |
| D5 – Relying on others to drive | “I can’t remember instances where I’ve missed out on things, but that’s mainly because of like my friends, and I think this is probably additionally impacts them, is because they’re the ones that have to drive at night because I’m not confident to do it.” (Female, 21) |
| D6 – Annoyance at blurred vision | “It’s just, it’s, it’s not that it’s changing my driving, almost nothing, but it’s just, it’s just annoying. I still can see and I still can distinguish, it’s not that I… my vision is that poor. If I couldn’t see, I wouldn’t drive, but it’s just annoying.” (Male, 43, Scleral contact lens) |
| D7 – Fear of crashing | “I can’t see or I’ll miss something. And that, that piece just terrifies me..it just terrifies me.,” (Male 51, Rigid contact lens,) |
| D8 – Needing sunglasses to drive | “if I don’t have those glasses there, it can at times make it impossible for me to, to be able see, or be able to drive.” (Male 51, Rigid contact lens,) |
| D9 – Difficulty with other lights | “the amount of like haloes and stretch lights from oncoming cars and traffic lights was just ridiculous really. And there’s blurry lights covering the road” (Male, 26, Glasses) |
| D10 – Difficulty Parking | “If I had to go into a shopping center, I wouldn’t be able to, like, I just didn’t feel confident reversing into a spot” (Female, 32, Glasses, Crosslinking, Intrastromal Corneal Ring Segments) |
| D11 – Fear of losing driver’s license | “That next fear is, you know, if my vision’s not good enough, I won’t get my driver’s license next.” (Male 51, Rigid contact lens,) |
| D12 – Concerns and issues with driving license | “I was worried, with having the vision issues that I wouldn’t be able to pass any tests and be actually able to get the license if I tried again.” (Male, 27) |
| D13 – Difficulty seeing obstacles | “Its just harder to see obstacles, especially at night time.” (Male, 39, Glasses, Keratoplasty) |
| D14 – Discomfort driving | “There’s no way that I would. Um, be able to drive confidently knowing where I’m going and what speed I’m meant to be going. Like even looking at the speedometer in the car, I’ll be squinting and spending a lot of time finding out where I’m sitting on the speedometer. I’m not really looking at the road.” (Male, 23, Glasses, Crosslinking, Keratoplasty) |
| D15 – Driving slowly | “I’ll have to put on the, high beams And, um, go slow, in especially an area, in a normal road that, I don’t know.” (Male, 39, Glasses, Keratoplasty) |
| D16 – Avoiding highways | “I try not to take the highways as often. I try to take, uh, like smaller, like back streets, roads.” (Male, 24, Glasses, Crosslinking) |
| D17 – Public transport is unreliable | “The biggest problem is mobility, you’ve got to rely on public transport. You’ve gotta rely on unreliable public transport.” (Male, 62, Glasses, Other surgery) |
| FINANCIAL | |
| F1 – Rigid lens; Cost of lens is high | “Well financial aspect is… one lens, it costs like at least one and a half thousand dollars. So, yeah, it’s a burden.” (Male, 43, Scleral contact lens) |
| F2 – Direct costs; Treatment; Surgery | “I went, saw a specialist. And he wanted all the money front, which we couldn’t afford at the time. He wanted, uh, close to $11,000 upfront to do the operation.” (Male, 55, Glasses, Keratoplasty) |
| F3 – Ongoing cost of solutions | “The solutions are. Um, expensive. Um, not extremely expensive. However, there is an expiry date on the solutions. For example, I use Boston Eye Conditioning Solution. Um, this costs about $16 and I need to purchase this every month along with saline solution and the cleaning, uh, a Boston cleaning, uh, bleach.” (Female, 35, Rigid lens) |
| F4 – Multiple pairs of glasses are expensive | “Purchasing glasses, that’s been pretty expensive. I mean, a, a decent script in frames is what, six, 700 bucks? And I’ve had to buy four pairs of glasses, so, That’s not great” (Male, 26, Glasses) |
| F5 – Needing to save for treatment | “It took us months and months to save up that money. Um, you know, I had a job at the time, I was working at 14, 15 at a fish and chip store. I was contributing as much as I could” (Male, 23, Glasses, Crosslinking, Keratoplasty) |
| F6 – Ongoing cost of updating contact lens | “It’s almost wasting your money because every six months you’re gonna have to buy new hard contact lenses and your eyes getting worse and worse, and you’re gonna change, and it’s just gonna be very expensive” (Male, 23, Glasses, Crosslinking, Keratoplasty) |
| F7 – Cost of treatment for injuries associated with keratoconus | “”Well, uh, apart from medical bills, costs and things like that, I don’t think its affected me that much. Perhaps the cost of accidents you get into, so, you know, For example, my tooth has cost $10,000 to get fixed. You know? You know, can I contribute that to keratoconus or just sheer stupidity and clumsiness? I don’t know.” (Male, 65, Glasses, Other surgery) |
| F8 – Indirect cost of travel for treatment | “we’d constantly have to make the flight six hour trip down to, to, to see the, the doc, the doctors. Uh, the, um, the, the surgeon that did it so he would monitor it and um, you know, it was quite costly and everything like that.” (Male, 23, Glasses, Crosslinking, Keratoplasty) |
| F9 – Family financial strain | “It’s definitely put a strain on my family with the money. Like we come from pretty poor family,” (Male, 23, Glasses, Crosslinking, Keratoplasty) |
| F10 – Rigid lens expensive relative to student income | “I think it was like 250 per eye. And back then when I was just like a student and like doing part-time work, it was a lot. And I’m not on a health fund too.” (Female 30, Glasses) |
| F11 – Difficulty accessing welfare | “It’s, yeah, it is frustrating cause like the government wouldn’t even care. Like I’m not even classed as disabled because like they would tell me that, you know, your condition can be fixed” (Female,37, Rigid lens) |
| F12 – Income limited by job opportunities | “It’s really hard for me to find a job. And even if I do find a job, the job wouldn’t pay me as much as, you know, I would like to earn.” (Female, 23) |
| OTHER | |
| O1 – Reliance on less affected eye | “Um, driving at night was a bit different. I never had any difficulties per se cause I still had my left eye, which could see clearly, it still can. So, um, yeah, driving was okay.” (Male, 28, Keratoplasty) |
| O2 – Acceptance of condition | “Pretty much everything. Um, it is something that you just have to accept early on.” (Male, 29, Scleral lens, Crosslinking, Other surgery) |
| O3 – Patient expresses minimal impact on QoL | “Uh, it doesn’t really affect me too much. Like there are, there are times, um, I guess it’s not nice as well when you kind of cover your left eye and then you kind of see yourself that its blurry, I guess that’s maybe sometimes a worry, like, “ok, is it gonna get worse?” and everything like that.” (Male, 39) |