Haemolytic Uraemic Syndrome in Childhood: Clinical, Cognitive and Psychological Aspects

Study Overview
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Brief Summary
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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.

Detailed Description
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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.

Official Title
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Haemolytic Uraemic Syndrome in Childhood: Clinical, Cognitive and Psychological Aspects

Conditions
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Hemolytic-Uremic Syndrome, Children, Parents, Psychological Adjustment

Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: children and youth from 2 months to 17 years who had suffered from haemolytic uraemic syndrome willingness and ability to participate in the study freely signed informed consent Exclusion Criteria: missing written informed consent children who do not fulfil the age criterion

Ages Eligible for Study
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Minimum Age: 2 Months
Maximum Age: 17 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| - renal function (estimated glomerular filtration rate according to the SCHWARTZ formula) after haemolytic uraemic syndrome in childhood |  | 1 year 5 months | 
| - quality of life of children with haemolytic uraemic syndrome and their parents |  | 1 year 5 months | 
| - neuropsychological sequelae of children with haemolytic uraemic syndrome |  | 1 year 5 months | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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haemolytic uraemic syndrome, complications of HUS, renal replacement treatment, renal function outcome, neuropsychological sequelae, psychological adjustment, quality of life