Delivery of a Tolvaptan (JINARC) Service for Adults with Autosomal Dominant Polycystic Kidney Disease (ADPKD) in a UK Renal Centre

Background: Tolvaptan slows down disease progression in ADPKD; however, its side effect and monitoring profile has implications for service provision and compliance.

Aims: To assess the

• Retention rate among patients on tolvaptan

• Compliance and tolerability of side effects.

• Monitoring process for as indicated.

• Average rate of change of eGFR pre-tolvaptan vs. post tolvaptan treatment

• Change in urate level, proBNP and haemoglobin after tarting tolvaptan

Design: A prospective questionnaire-based service evaluation of atients and a retrospective observational study of eGFR change, haemoglobin, roBNP and urate before and after tolvaptan treatment.

Method: We collected demographic data, eGFR change 12 months before tolvaptan initiation and compared it to eGFR change after initiation. We carried out a questionnaire that explored patient education, side effects andcompliance.

Results: The retention rate during the period of the study was 92.6%.

55% indicated that they were 100% compliant with treatment. 80% indicated that the side-effects were tolerable. 65.8% of appointments were attended and 69.2% of blood tests were done at the required frequency. Rate of eGFR decline reduced by 1 ml/min/year after commencing tolvaptan.

The median urate level rose by 6.5% (26 μmol/L) but reverted to baseline after 18 months. The median proBNP (68 ng/L) increased by 26%. Median haemoglobin levels remained stable.

Conclusion: Compliance rates were comparable to patients on treatment for other long-term conditions.

Author(s): Aaron Acquaye* and Sunil Bhandari

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