Transcripts
DR. BRANDT:
It's difficult to interpret outcome studies in HUS. There are a lot of studies, but before I tell you about the outcome studies, I just want to point out some of the problems we have in interpreting them. HUS is a rare disease. There are variations in HUS between patients, between different E. coli 0157 strains. Different researchers use different outcome measures, which makes them difficult to compare sometimes.
And then there is an understandable lack of long term follow-up by some families after HUS. I'm probably preaching to the converted, here, but I think a lot of parents once they get through the horrific experience of HUS are not in big hurry to go back for blood sticks and GFR and urine analysis.
So it is a problem sometimes to get people to come back five, ten, fifteen years later to see how their kidneys are doing when the kid feels well and may have somewhat of an understandable phobia about the hospital.
So, for many reasons, it may be difficult to compare the studies that are available.
