Abstract
BACKGROUND AND OBJECTIVES: We evaluated rates and factors associating with late referral (LR) and describe association of LR with access to renal transplantation and patient survival in children in the United Kingdom. Early requirement of RRT within 90 days of presentation to a pediatric nephrologist was classed as a LR, and those >90 days as an early referral (ER). DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: We included patients who commenced RRT, aged ≥3 months and <16 years, from 1996 to 2012. RESULTS: Of 1603 patients, 25.5% (n=408) were LR, of which 75% commenced RRT in <30 days following presentation. Those with LR were more likely to be older at presentation, female, and black. The primary renal disease in LR was more likely to be glomerular disease (odds ratio [OR], 1.6; 95% confidence interval [95% CI], 1.12 to 2.29), renal malignancy and associated diseases (OR, 4.11; 95% CI, 1.57 to 10.72), tubulo-interstitial diseases (OR, 2.37; 95% CI, 1.49 to 3.78), or an uncertain renal etiology (OR, 5.75; 95% CI, 3.1 to 10.65). Significant differences in rates of transplantation between LR and ER remained up to 1-year following commencement of dialysis (21% versus 61%, P<0.001) but with no differences for donor source (33.3% and 35.3% living donor in LR and ER respectively, P=0.55). The median (interquartile range) follow-up time was 4.8 years (2.9-7.6). There were 55 deaths with no statistically significant difference in survival in the LR group compared with the ER group (hazard ratio, 1.30; 95% CI, 0.7 to 2.3; P=0.40). CONCLUSIONS: We found that 25% of children starting RRT in the United Kingdom receive a LR to pediatric renal services, with little change observed over the past two decades. Those with LR are unable to benefit from pre-emptive transplantation and require longer periods of dialysis before transplantation. There is an urgent need to understand causes of avoidable LR and develop strategies to improve kidney awareness more widely among health care professionals looking after children.