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Update RICH-Q

Update RICH-Q. Advisory Board Meeting October 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

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Update RICH-Q

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  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. What have we learned? (2) • 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

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

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

  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

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

  22. 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.

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