1. Update RICH-Q Advisory Board Meeting October 2011

2. RICH-Q 1 → RICH-Q 2 -Goals and achievements -Publications -Current number of patients

3. 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

4. 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 ESRD PWV measurement instruments. Assessment of the reproducibility and validity of PWV and echocardiogram measurements Add-on studies Study groups Several presentations Papers

5. 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

6. 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)

7. Not yet achieved Change in QoC –(guideline implementation and benchmarks) Useful outcome measures Continuation of the add-on studies

8. Publications

9. 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

10. 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.

11. 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

12. Current number of patients

13. Therapy at start RICHQ Total: 230 HD: 77PD: 105 TX: 48 Total: 260 HD: 91 PD: 114 TX: 55

14. Current therapy Total: 215 HD: 32 PD: 40 TX: 143

15. 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

16. Patients missing? Year of inclusion Centre

17. Data entry delay Measurements points: 141 missing HD: 36 PD: 58 Tx (without M0 and M3) : 47

18. NfN indicators (dialysis)

19. RICH-Q website

20. <11 g/dl

22. Thesis of Marieke Tromp Manuscript? Adres Friday 25 nov. 2011 Thesis defence and reception: 12.00, Amsterdam. Party 21.00, Amsterdam

23. 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.