Update RICH-Q

Advisory Board MeetingOctober 2011

RICH-Q 1 → RICH-Q 2

-Goals and achievements

-Publications

-Current number of patients

Goals RICH-Q 1

• To establish the current quality of care in children with ESRD in the Netherlands and Belgium

• To increase the quality of care of children with ESRD by frequent peer review and discussions of local outcomes

• To build up a comprehensive database on treatment characteristics and outcomes in order to conduct prospective outcomes studies

• To foster clinical studies

Achieved• Database and website • Survey of treatment policies • Advisory board meetings (8) • 11 centers: Cologne • Consensus meetings of quality indicators/ benchmarks • 2SR’s

management of children with ESRDPWV measurement instruments.

• Assessment of the reproducibility and validity of PWV and echocardiogram measurements

• Add-on studies• Study groups • Several presentations • Papers

What have we learned? (1)

• Important differences in dialysis policies:

- between centres

- between policy and actual care

• 17 guidelines, 369 recommendations

only 6% evidence based

• Immigrants

- Tx: less pre-emptive and living donor

higher risk for acute rejection

- Dialysis: more HD (less PD)

longer HD, more ROD, more peritonitis

• Pulse Wave Velocity

– Smallest Detectable Change 1.05 m/s

• Echocardiogram

– low agreement diagnosis LVH

– Smallest Detectable Change 1.6 mm

• Tissue doppler: more detection of DD compared to conventional echocardiogram

What have we learned? (2)

Not yet achieved

• Change in QoC – (guideline implementation and benchmarks)

• Useful outcome measures

• Continuation of the add-on studies

• Publications

Accepted • Comparison of two instruments measuring carotid-femoral pulse

wave velocity: Vicorder versus SphygmoCor JoH

• Lessons learned from efforts to improve the quality of care in children with end-stage renal disease in the Netherlands and Belgium. ADC

• Important differences in management policies for children with end-stage renal disease in the Netherlands and Belgium – Report from the RICH-Q study. NDT

• Less pre-emptive renal transplantations and more rejections in immigrant children compared to native Dutch and Belgian children. NDT

Submitted

• Scope and foundation of current guidelines for the management of chronic dialysis in children; a systematic review : a systematic review. NDT

• Reproducibility of pulse wave velocity measurement in children with end-stage renal disease. Ped Neph

• Chronic dialysis treatment and outcomes differ between immigrant and native Dutch and Belgian children. Ped Neph

• Clinimetric characteristics of instruments that measure pulse wave velocity in adults and children are poorly reported: a systematic review. J. Clin epi.

In progress• Low agreement between cardiologists diagnosing LVH in

children with ESRD

• Does Tissue Doppler measurement lead to earlier detection of diastolic dysfunction in children with ESRD than conventional ultrasound measurement of E/A ratio?

• Important differences in management policies for renal transplantation in children in the Netherlands and Belgium -Report from the RICH-Q study

• The RICH-Q effect of 4 years feedback of care information, peer discussion and guideline development on standard of care in centres for RRT in children

• Quality of life in Dutch and Belgian children with End Stage Renal Disease

Current number of patients

Therapy at start RICHQ

Total: 230

HD: 77PD: 105

TX: 48

Total: 260

HD: 91

PD: 114

TX: 55

Current therapy

Total: 215

HD: 32

PD: 40

TX: 143

Outflow (n=45)

• Deceased: 6• - Primary disease (2): Complications of cong. heart disease

operation, - Wilmstumor with metastasis,

- Secondary disease (4):

Pulmonary hypertension, - Postoperative complication after changing a hemodialysis catheter (no autopsy),

-2x Respiratory insufficiency (1x no informed consent)

• Adult care: 34• No informed consent: 3• Pre emptive Tx failure without cRRT: 1

• Moved: 1

Patients missing? Year of inclusion

Centre

Data entry delay

Measurements points: 141 missing

• HD: 36• PD: 58• Tx (without M0 and M3) : 47

NfN indicators

(dialysis)

RICH-Q website

<11 g/dl

Thesis of Marieke Tromp

• Manuscript? Adres

Friday 25 nov. 2011• Thesis defence and reception:

12.00, Amsterdam.

• Party 21.00, Amsterdam

Thank you gift

RICH-Q Book.

- pictures/ stories/ drawings from children/ personal note/ etc…

- Please email me your personal message to Marieke before November 1th.