Shiga toxin-associated hemolytic uremic syndrome (STEC-HUS) is the main cause of acute kidney injury in children and may be responsible for adverse outcomes despite an apparent quiescent period.

To describe the medium- and long-term kidney outcomes of pediatric STEC-HUS in a French region.

A single-center, descriptive, retrospective study of STEC-HUS cases that occurred at Besançon University Hospital between 1999 and 2017 in children up to 17 years of age was conducted. The primary study endpoint was the proportion of chronic kidney disease (CKD) cases at 5 years of follow-up.

We included 98 consecutive patients. Among the 71 patients at the 5-year follow-up, we found 24 (34 %) patients with no adverse kidney outcome, 18 (25 %) with moderate adverse kidney outcome, and one (1.4 %) with severe adverse kidney outcome. Among the 96 patients at 1 year from the diagnosis, these figures were, respectively, 25 (26 %), 51 (53 %), and two (2 %); and among the 38 patients at 10 years, they were, respectively, nine (24 %), 12 (32 %), and one (3 %). The glomerular filtration rate level and oliguria–anuria beyond 8 days at baseline were significantly associated with more severe kidney outcomes at 10 years (p = 0.03 and 0.005, respectively). Two patients died during the acute phase. Overall, 33 patients (34 %) were lost to follow-up.

Adverse kidney outcomes may appear many years after an episode of STEC-HUS despite an apparent quiescent period. Regular long-term monitoring is required. The challenge is to reduce the proportion of patients lost to follow-up with potentially severe adverse kidney outcomes and no evaluation or treatment.