UK Keratoconus Self-Help and Support Association

It struck me when I last went to the Eye Hospital just how fat my hospital notes file was getting... I think perhaps the FBI have less on some key suspects than our hospitals hold on our KC history!

On the same subject I am not certain how much national data is available on the prevalence of KC.

The survey could ask (and I accept some questions will be unknown):

UK Location (nearest town)
Age (or range)
Sex
Ethnic origin
Year of diagnosis
Eyes affected
Mild, Moderate, Advanced
Graft carried out (L/R/both/L problem/R problem)
Intacs wearer (L/R/both/L problem/R problem)
C3-R (L/R/both/L problem/R problem)
Other related operations (Scar removal, Cataract, Retinal detachment etc)
Lens type (Silicon Hydrogel, Corneal RGP, Scleral, Piggyback, Hybrid)
L Correction (diopters)
R Correction (diopters)
VA with correction (6/6 etc)
VA without correction
Average wear time (hours)
Cleaning solution (Boston,Miraflow,Total,Renu,Boots own etc)
Wetting solution (as above)
Driver (y/n/had to give up)
Night-time vision problems (y/n)
Can see well with glasses (y/n/partial)

It could either be done online or via a physical mailing from the KC Group.

I would be happy to assist with collating this data and putting it into a spreadsheet so that we could graph it and share it within the group and the medical professionals around the world.

If we have any statisticians amongst us then I am sure they could modify the above accordingly.

Ian

Hello Ian,

Thanks for this. The group did in fact carry out a paper-based survey along the lines you suggested about 4.5 years ago, and the results were published at our 2003 conference.

Our membership has certainly grown since then, and questions on newer techniques should be included.

We did however carry out an (online and paper) mini-survey recently, and the return rate was very poor. As the statistitians on the committee pointed out however, we need to know what we're going to do with the information before we gather it, or the whole exercise is pointless.

Its a good idea. It would be useful I presume for trend analysis, familial connections, average difference between eye, just a UK shot at the how prevalent is KC argument. I also think its a whole lot of work. To up the return rate it might be possible to collect the information through an on-line survey, conducted when members log on. I am not sure how representative our group is? I think there are plenty of KC sufferers who get on fine with glasses and lenses and do not post on here. Many will post when they first get diagnosed and do a search on KC, find this place, ask a few questions and move on. Its an ambitious project.

Yes, the web membership is not very representative at all. The postal membership is much more so.

Even when we did our mini-survey recently and allowed people to fill in a form and post it back at their expense or answer via a web form, most (even those with email addresses!) opted to fill in the paper form.

As for learning the prevalance of KC, I'd guess that among our (postal) members it is approaching 90%.