Graft survival rates

[Loopy-Lou]

It was sobering reading in the newsletter regarding long term survival rates and re-graft survival rates, and PK and DALK comparisons in the Aus and French studies. The re-graft survival only 53%, Moorfields claim 80%.

Has anyone been through graft failure? How quickly does it happen? does it mean loss of total sight overnight, weeks, months?

[Loopy-Lou]

Do Moorfields have published survival rates for grafts and re-grafts? There must be some published stats for the UK

[Andrew MacLean]

Louise

It's really good to hear from you; you raise important questions, but I'm afraid I don't know the answers. Maybe there will be somebody along in a moment who does. I'll try to hunt down an answer through my medical ethics committee contacts.

Every good wish.

Andrew

[Loopy-Lou]

Hi Andrew, always good to see you. I can't believe Moorfields don't have their own stats [even for internal audit purposes], but I can't locate anything online. What I was quoted a couple of years ago is quite a jump from the Aus study, 80 - 53% is a big difference for re-graft.
I know there are members who have had their grafts as long as mine [21/27 years] but again the Aus stats for survival at 23 years for 1st grafts at only 17% alarms me enough to reconsider my decision of a couple of years ago to not go ahead with a re-graft, however 53% doesn't encourage me like 80% might. I'm sure most of us would want to know the UK stats to compare.
I know none of us want to think about graft failure, but us oldies probably have greater need to at least be informed but it's hard to find info on failure, articles are typically about rejection which is not the same. I'd like to know that if my graft/s failed, how long I would have from onset of symptoms to blindness.
Could we as a group ask Moorfields for the stats for example? [or another centre if they hold more]

[Anne Klepacz]

I'll certainly post any info that I can get.
For those who aren't on the KC Group mailing list and so haven't seen the newsletter, can I just add that the stats in the Australian study quoted are for PK (full) grafts. Most people these days have DALK (partial) grafts and the survival rates for those are projected to be considerably longer. And of course, there are quite a few of us here whose 1st grafts are already pushing the 30 year mark or even older!
We have had a few people on the forum who have had regrafts 20 or more years after the original grafts. Maybe some of them can tell us about their experience. As far as I remember from talking to a couple of people, any deterioration in sight with a old graft happens over quite a long period of time - it's certainly not a sudden thing.
Anne

[Loopy-Lou]

Many thanks Anne, I believe there has to be UK stats somewhere because Aus cannot be the only country collating them, there must be some here [and past the 5 yr mark], if only for internal auditing purposes. I know graft patients are hard to follow over 50 years, but then so must solid organ transplant patients.
If, there really were no stats anywhere [hard to believe] then maybe we at least could start something online, such as a single permanent board for graftee's to report how long they've been grafted/re-grafts, so a purely factual archive. I know that not every single UK patient would necessarily report to it, but it's gotta be better than nothing if the NHS can't give us the answers.

Living with uncertainty and making major decisions based on that uncertainty is certainly a topic for useful discussion as it's an extension of issues we have raised previously regarding emotional wellbeing, distress and mental health in relation to KC.

Speaking of which, may I suggest the forthcoming conference consider inviting a CAB advisor to speak on welfare issues as I'm listening to horror stories of people with visual impairment being asked to do things in assessments which they can't see the assessor suggesting. Ophthalmic professionals need to be made aware of these issues if they are to write supportive reports.

ps could have scleral 'frisbee' competition too [sorry Ken]

[longhoc]

Hi Louise

One of the big problems here is statistical modelling. If we were to read, say, that the "average graft survival time" was maybe 10 or 15 years we'd obivously think to ourselves "oh, my graft is X years old, this means that I've only got Y years left and then on the Zth-year aniversary it will conk out".

Of course, we know that's not how it is at all. While such statistics are a useful guide, the lack of a large sample size and the effective isolation of each of the contributary factors in a graft failure makes it pretty much useless for telling us how long *our* graft will actually last in reality.

For insrance, a previous history of eye trauma will reduce survivial rates. A re-graft is less robust than the first one. A graft that replaces a centraly located small area is easier than a marginal area large graft. If a patient is 70 when they have their graft, then it's far more likely that the graft will outlive them (!). Some patients are excellent with their post-graft after care regime, some less so. Some grafts are lost through unrelated factors e.g. other disease processess, eye injury etc. And so on. To correct for such variables, you need a good set of data for the affects on graft survival rates for each variable. This data simply does not exist.

Even if it did, boiling down a complex set of patient outcomes into a single figure is often completely misleading. Let's say that you and I were the only graft patients in the country. I had my graft and you had yours on the same day. Amazingly, both of our grafts were of a comparable size, our histories with Keratocnus were identical and we got genetically identical donor tissue. So we'd isolate a lot of those contributory factors to graft failure I mentioned earlier. We're both meticulous in post-op graft care and neither of us has any secondary eye disease. My graft fails at 5 years but your graft lasts 25 years. The mean graft survival time is therefore 15 years. So another person researching about grafts thinks "oh, that's okay, 15 years isn't too bad". But the problem is, they're getting a totally false impression aren't they ? Their graft, if they had one, is just as likely to last a mere 5 years as it is to last 25 years.

Bottom line is, without the underlying data -- in full -- and a lot of wading through the numbers, it's easy to get wrongfooted by headline numbers !

Cheers

Chris

PS I was quite looking forward to going into "battle" with my DLA to PIP reassessment. But I think that I'm going to be deferred until 2015 as I was awarded "for life" and they are not doing such cases for another couple of years. But yes, we have to make sure that we don't get pushed into having our entitlements, when we are genuinely entitled to them, stolen from us. Because that's what it is, a cheap attempt at taking from people what is rightfully theirs. Easier if you've got a support network who can help you fight your corner if needs be; the people who really and truly suffer are those who don't have a support network in place for them. And top of that list are probably those with mental health issues who may be even more isolated that those with a "mere" physical disability. It is my sincere hope that no-one who is a member of this group ever feels that way.

[Anne Klepacz]

I promised to post more information when I got it, so -
There is no comparable long-term data from the UK or Moorfields unfortunately. So the Australian registry data is still the benchmark. And as the Australian practice of ophthalmology is very similar to that in the UK (a lot of their surgeons come to Moorfields for training) it's reasonable to assume that results here would be similar.
For those people who have a full penetrating (PK) graft that starts to fail after many years, it is now possible to transplant just the back layer of the cornea (the bit that fails, the endothelium) rather than doing a complete transplant again, though if the shape of the existing graft is not good, then a full transplant would be done again. Not all surgeons currently do the endothelial graft, but it's always possible to request a second opinion form one who does.
Anne

[Loopy-Lou]

I hear what you're saying Chris, there are SO many variables, but despite that I just want for all of us to have as much info as is possible, even if it isn't 'complete' and doesn't prove useful in decision making. The re-graft survival rate was quoted to me at 80% so the 53% was a bit of a jolt..

I'm seeing people who are in no position to do battle re: ESA and DLA, it doesn't just come down to support networks, it also comes down to CAB accessibility [appeals must have representation]. Some GP's won't write reports, only for appeals [which guarantees it will have to go to appeal], and funding cuts and 'recovery model' ideology means discharge asap from secondary services therefore no specialist report for many. Revisions in January also mean you cannot appeal without a 'reconsideration' first, this has no time limit and is unpaid [and is not paid back if you progress to appeal]. So this effectively removes the ability to appeal, unless you can live on nothing for weeks/months during reconsideration.
I've seen first hand one friend end up in ITU before even being assessed, another is sectioned, frankly I'm waiting for the first suicides within my circle of friends, take away income and housing support, the grip on life becomes tenuous.
People with visual impairment are at risk, anyone and everyone is, and I doubt ophthalmology have really cottoned onto this.

Endothelial grafts are good to hear about Anne, would be good to know more about that i.e. sutures, healing time as compared PK, how soon lenses can be fitted

[Anne Klepacz]

Sorry, Lou, don't know the answers to the questions about endothelial grafts - I don't know whether any of our members have yet had one. Though that is the sort of graft that is now done by some surgeons for people with Fuchs Dystrophy (a corneal condition that affects the back of the cornea and not the front) so that website might have more info.
As for the awful things that are happening around ESA, DLA, social housing etc, I know a lot of the big disability charities are campaigning on these issues (including RNIB) so I guess they're probably the best port of call for people faced with this. And maybe something we can ask about at the London meeting in a few weeks time, when the Patient Support people from Moorfields will be talking to us.
Anne