To improve the quality of care for children with End Stage Renal Disease by central registration and frequent intervision.
ID
Source
Brief title
Condition
- Heart failures
- Nephropathies
- Arteriosclerosis, stenosis, vascular insufficiency and necrosis
Synonym
Research involving
Sponsors and support
Intervention
Outcome measures
Primary outcome
In the research protocol a list is shown with all quality indicators that are
to be meausured. Most of them are normal contrals that are allready routinely
done, some are extra measurements that will be doen once a year. with these
quality indicators assessment of the quality of care of children with renal
Replacxement therapy will be done and by peer intervision we hope to improve
the therapy.
Secondary outcome
cardiovascular co-morbidity
mortality
Background summary
Despite all progress that has been made in the quality of renal replacement
therapy (RRT) in children over the last 30 years, the overall mortality and
morbidity at young adult age has remained unacceptable high. According Dutch
data (the LERIC study), the overall mortality risk is 30 times increased. Over
40% of the adult survivors daily suffer from somatic co-morbidity. As compared
to the general population, their educational level is significantly lower and
the unemployment is about twice as high as.
No data exist on the exact influence on these outcomes of the several treatment
modalities, such as peritoneal dialysis, conventional haemodialysis, extended
forms of haemodialysis and transplantation.
In the Netherlands and in Belgium, chronic renal replacement therapy in
children is provided by 4, respectively 5 rather small medical centres. Until
now, no structural corporation exists between these centres and there is no
consensus on general guidelines with respect to dialysis treatment or treatment
after transplantation. From oral communication, the impression is that the
centres have a quite different therapeutic approach of children with end-stage
renal disease (ESRD).
Cardiovascular disease is the main caused of death in patients with paediatric
ESRD. In adults with ESRD, several non-invasive diagnostic tools have been
developed to detect cardiovascular disease and to predict the risk for early
cardiac death. Reliable data in children with respect to these methods are
scarce. Early detection and therapeutic intervention of cardiovascular disease
appears to be essential in children with ESRD in order to prevent sudden death
in early adulthood.
Central quality assessment by registration of certain treatment characteristics
that predict outcome, i.e. quality indicators, in combination with a quality
research project has proven to be an important tool to improve the quality of
treatment. Recent international studies have shown that chronic peritoneal
dialysis treatment in children under continuous quality surveillances indeed
improves in quality.
Study objective
To improve the quality of care for children with End Stage Renal Disease by
central registration and frequent intervision.
Study design
This is an observational noninvasive study.
It's a multicenter study in which all hospitals in The Netherlands and Belgium
that take care of children with End Stage Renal Disease are involved. There are
4 hospitals in the Netherlands and 5 hospitals in Belgium that provide this
care and will be involved in the study.
Study burden and risks
Because this study is observational and non invasive there's no extra risk
associated with participation. The burden is minimized because the patient
does'nt have to come extra, doesn't need to undergo extra venapunctions or
whatsoever. The only burden there is is the time needed to perform the pulse
wave velocity and to fill out the Quality of Life Questionnaires. Because the
main objective of the study is to improve the quality of care, we think this
benefit is more important than the time needed for participation.
Postbus 22660
1100 DD Amsterdam
NL
Postbus 22660
1100 DD Amsterdam
NL
Listed location countries
Age
Inclusion criteria
1. All Dutch and Belgian prevalent patients on chronic dialysis aged < 19 years old at start of the study
2. All incident Dutch and Belgian patients with End Stage Renal Disease < 19 years (dialysis and transplantation )
Exclusion criteria
-
Design
Recruitment
Followed up by the following (possibly more current) registration
No registrations found.
Other (possibly less up-to-date) registrations in this register
No registrations found.
In other registers
| Register | ID |
|---|---|
| CCMO | NL16726.018.07 |