Children Clinical Trial
Official title:
Haemolytic Uraemic Syndrome in Childhood: Clinical, Cognitive and Psychological Aspects
The purpose of this study is to investigate the clinical, cognitive outcome and psychosocial
outcome of haemolytic uraemic syndrome in childhood.
The haemolytic uraemic syndrome (HUS) is the leading cause of acute renal failure in
childhood. The more common typical HUS is mostly caused by Shigatoxin-producing
enterohaemorrhagic Escherichia coli (EHEC). The rarer atypical HUS is mainly caused by
different genetic abnormalities in complement regulatory proteins.
About 50 till 60 percent of all patients with HUS develop a severe acute renal failure and
require dialysis. Resulting from new diagnostic and therapeutic approaches the survival rate
increased during the last years. Despite this, there are only few data concerning long-term
prognosis, cognitive and motoric development, as well as psychological coping and
health-related quality of life of affected children and their parents.
The main purposes of this study are: the evaluation of the long-term renal function of
pediatric HUS-patients; the evaluation of the dialysis method in the acute phase of the
disease and its impact on the duration of the renal-placement-therapy, as well as the
long-term renal function; the evaluation of the intellectual and motoric performance of
affected children and the evaluation of the health-related quality of life and psychological
processing of the patients themselves and their parents.
All cases of HUS treated at the University Children`s Hospital Zurich between 1995 and 2012
will be analyzed retrospectively. In the course of a routine-follow-up-examination the
clinical data of patients up to the age of 17 years will be actualized and completed. The
results of clinical and paraclinical investigations related to renal function will be
evaluated to describe the clinical features of haemolytic uraemic syndrome in childhood.
Intellectual performance will be analyzed with the Wechsler-Intelligence Scale for
Children-IV (WISC-IV) and motoric performance with the Zurich Neuromotor Assessment in
children at the age from 6 to 16 years.
The health-related quality-of-life of all parents and affected children from the age of 7
years will be assessed by different generic quality-of-life-instruments.
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Observational Model: Cohort, Time Perspective: Retrospective
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