Joanne Shaw

UK Renal Registry 11th Annual Report (December 2008): Chapter 13 Demography of the UK paediatric renal replacement therapy population.

Aims: To describe the demographics of the paediatric RRT population in the UK and analyse changes in demographics with time. Methods: Extraction and analysis of data from the UK paediatric Renal Registry. Results: The UK paediatric established renal failure (ERF) population in April 2008 was 875 patients. The prevalence under the age of 16 years was 55 per million age related population (pmp) and the incidence 7.92 pmp. The incidence and prevalence for South Asian and Other ethnic groups were 3 times that of the White and Black populations. Renal dysplasia was the most common cause of ERF accounting for 33% of prevalent cases. Diseases with autosomal recessive inheritance were more common in patients from ethnic minority groups. The spectrum of diseases seen has changed over a generation. Overall 5 year survival for children with ERF was 91.8%. Five year survival of infants starting dialysis was just 62%. Transplanted patients accounted for 74% of the current population. The proportion with grafts from living donors has steadily risen to 34%. Children from ethnic minority groups were less likely to have an allograft and living donation was less frequent in this population. For those on dialysis, 57% were receiving peritoneal dialysis. This was the main treatment modality for patients under 4 years of age. Conclusions: The paediatric ERF population continued to expand slowly. Incidence and prevalence rates were stable and similar to other developed nations. The high incidence in patients from ethnic minority groups will lead to a greater proportion of the population being from these groups in time. To maintain the high proportion of engrafted patients it will be necessary to encourage living donation in the ethnic minority population. The spectrum of diseases seen has already changed over a generation with the treatment of young children with diseases such as congenital nephrosis. The incidence of cystinosis causing ERF was reduced, probably reflecting better early treatment.

Appendix D: Methodology used for Analyses of PCT/ Local Authority Incidence and Prevalence Rates and of Standardised Ratios

The areas used were the 148 English primary care trusts (PCTs), the 4 English care trusts, the 22 Welsh local authorities, the 32 Scottish council areas and the 26 Northern Ireland district council areas – these different types of area are collectively called PCT/LAs here. In Northern Ireland, Scotland and Wales, the health authority boundaries align with the LAs and these areas have been included along with the English PCTs in the tables.

Appendix E: Additional Data Tables for 2008 new and existing patients

Abrdn 85 15 L Rfree 84 11 4 Airdrie 92 8 L St.G 62 18 20 Antrim 90 10 LWest 86 4 9 B Heart 84 14 2 Leeds 69 20 11 B QEH 73 23 4 Leic 79 10 12 Bangor 86 14 Liv Ain 98 2 Basldn 83 18 Liv RI 66 27 7 Belfast 84 12 4 M Hope 46 46 7 Bradfd 85 15 M RI 71 16 13 Brightn 66 33 1 Middlbr 80 13 8 Bristol 75 19 6 Newc 72 22 6 Camb 87 10 3 Newry 85 15 Cardff 78 15 7 Norwch 79 15 5 Carlis 74 23 3 Nottm 73 22 5 Carsh 85 14 1 Oxford 62 27 12 Chelms 73 27 Plymth 56 26 19 Clwyd 92 8 Ports 68 24 8 Colchr 100 Prestn 74 20 6 Covnt 74 19 6 Redng 70 25 5 Table E.1.2. Number of patients per treatment modality at 90 days

UK Renal Registry 11th Annual Report (December 2008): Appendix D Methodology used for analyses of PCT incidence and prevalence rates and of standardised ratios

The areas used were the 152 (English) Primary Care Trusts (PCTs), the 22 Welsh local health boards, the 32 Scottish council areas and the 26 Northern Ireland district council areas – these different types of area are collectively called PCTs here. Prior to 2007, only some of the boundaries of PCTs and Local Authorities (LAs) in England were similar. There were roughly twice as many PCTs as LAs and the registry reports published analyses by LA in the main report and prevalence rates by PCT as an appendix. In October 2006, the Office for National Statistics reduced the number of PCTs and re-aligned many of the PCT boundaries in England with those of Local Authorities. As a result, in the 2008 Report these analyses will be presented by PCT (not LA). For data for years before the boundaries changed, patients are allocated to the new PCTs as they are now. In Northern Ireland, Scotland and Wales, the Health Authority boundaries align with the LAs and these areas have been included along with the English PCTs in the tables.