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ResearchBIORXIVWednesday, May 6, 2026 · May 6, 2026

Preprint: Variation in Tolvaptan Prescribing for Autosomal Dominant Polycystic Kidney Disease in the United Kingdom and Its Impact on Quality of Life and Costs

WHY IT MATTERS

If you have ADPKD in the UK, this research could help explain why access to tolvaptan—the only disease-slowing treatment available—varies depending on which kidney center treats you.

A new study looked at how often doctors in the UK prescribe tolvaptan, a medicine that slows kidney disease in patients with ADPKD (a genetic condition where cysts grow in the kidneys). The researchers found that some patients who should get this medicine don't receive it, while others who aren't eligible do get it. This variation in prescribing patterns may affect how well patients do and how much the healthcare system spends.

Variation in Tolvaptan Prescribing for Autosomal Dominant Polycystic Kidney Disease in the United Kingdom and Its Impact on Quality of Life and Costs Authors: Gittus, M. et al. Server: medRxiv Category: nephrology Abstract: Background and hypothesisAutosomal dominant polycystic kidney disease (ADPKD) affects over 12 million people worldwide including an estimated 30,000-70,000 in the United Kingdom (UK). Tolvaptan is the only disease-modifying therapy approved for rapidly progressing disease. Despite national guidance, prescribing rates were hypothesised to vary by kidney centre. Treatment may not always align with guidelines: some patients eligible for tolvaptan may not be initiated, while other patients initiated on tolvaptan may not meet eligibility criteria. This may have important consequences for healthcare

ASK YOUR DOCTOR

If you have ADPKD, ask your kidney specialist whether you meet the criteria for tolvaptan treatment and why it has or hasn't been recommended for you.

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adpkdtolvaptanprescribing variationuk healthcaretreatment access

Related conditions

Autosomal dominant tubulointerstitial kidney diseaseAutosomal dominant polycystic kidney diseaseAutosomal dominant polycystic kidney disease type 1 with tuberous sclerosis