A national registry study of patient and renal survival in adult nephrotic syndrome

Anna Kolb, Jacqueline Campbell, Martin O'Neill, James R. Smith, Samira Bell, Bryan R. Conway, Wendy Metcalfe, Nicola Joss, Vishal Dey, Annette Alfonzo, Michael Kelly, Shahzad Shah, Emily McQuarrie, Colin Geddes, Jamie Traynor, Robert W. Hunter (Lead / Corresponding author), Scottish Renal Biopsy Registry

Research output: Contribution to journalArticlepeer-review


Introduction: We aimed to determine mortality rate, cause of death and rate of end-stage kidney disease (ESKD) in adults with nephrotic syndrome.

Methods: We conducted a national registry-based study, including all 522 adults who had a kidney biopsy for nephrotic syndrome in Scotland in 2014-2017. We linked the Scottish Renal Registry to death certificate data. We performed survival and Cox proportional hazards analyses, accounting for competing risks of death and ESKD. We compared mortality rates with those in the age- and sex-matched general population.

Results: 372 patients had primary nephrotic syndrome; 150 had secondary nephrotic syndrome. 110 patients (21%) died during a median follow-up of 866 days. In patients with primary nephrotic syndrome, observed vs. population three-year mortality was 2.1% (95%CI 0.0–4.6%) vs. 0.9% (0.8–1.0%) in patients aged under 60 years and 24.9% (18.4–30.8) vs. 9.4% (8.3–10.5) in over-60s. In secondary nephrotic syndrome this discrepancy was 17.1% (5.6–27.2) vs. 1.1% (0.9–1.2) in under-60s and 49.4% (36.6–59.7) vs. 8.1% (6.6–9.6) in over-60s. In primary nephrotic syndrome, cardiovascular causes accounted for 28% of deaths, compared to 18% in the general population. 80 patients (15%) progressed to ESKD. Incidence of ESKD by three years was 8.4% (95%CI 4.9–11.7) in primary and 35.1% (24.3–44.5) in secondary nephrotic syndrome. Early remission of proteinuria and the absence of early acute kidney injury were associated with lower rates of death and ESKD.

Conclusions: Adults with nephrotic syndrome have high rates of death and ESKD. Cardiovascular causes account for excess mortality in primary nephrotic syndrome.
Original languageEnglish
JournalKidney International Reports
Early online date4 Nov 2020
Publication statusE-pub ahead of print - 4 Nov 2020


  • nephrotic syndrome
  • glomerular disease
  • minimal change nephropathy
  • mortality
  • ESKD
  • cardiovascular disease

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