Can we improve diagnosis of renal failure? A revised coding system for Middle East and North Africa

Reporting data on primary renal disease (PRD) causing end-stage renal failure (ESRF) is generally inconsistent and diagnostic groups poorly defined.

We have identified all papers published from the Eastern Mediterranean, Middle East, Arabia and North Africa during the decade 2000-2009 that report data on PRD in patients reaching ESRF in this region.

We propose a system in which all diagnoses fall into one of 8 broad groups: ESRF of uncertain etiology, Congenital abnormalities of the kidney and urinary tract (CAKUT) and acquired Uropathy, Glomerular diseases, Tubulo-interstitial disease (TID), Other Congenital and Familial diseases, Diabetes, Renovascular disease, Other Specified Diagnoses. Each group has sub-headings, for instance, primary glomerulonephritis, secondary glomerulonephritis, and hereditary glomerular disease. And then for each sub-heading there is list of specific diagnoses similar to that used by EDTA and USRDS coding systems. We also recommend that 'etiology unknown' group should be reported in more detail as either 'glomerular phenotype' or 'tubular phenotype' and careful attention paid to evidence for a family history of renal disease. To improve reporting, all patients who are diabetic, and all who have evidence of familial inheritance, should be recorded and then a diagnostic category should also be chosen. So a diabetic patient is designated as 'diabetic nephropathy' only if they fulfil the case definition for that diagnosis.

We know that collecting PRD data can be done much better as we have the example of the pediatric community which collects data that is very consistent, and has a low rate of 'unknown disease'.