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The following is a summary of “Treatment discontinuation in adults with atypical hemolytic uremic syndrome (aHUS): a qualitative study of international experts’ perspectives with associated cost-consequence analysis,” published in the November 2024 issue of Nephrology by Germeni et al.
Atypical hemolytic uremic syndrome (aHUS) is a rare, life-threatening condition caused by mutations affecting complement regulation. Recent evidence suggests that discontinuation of eculizumab or ravulizumab may be feasible for many patients.
Researchers conducted a mixed-methods study to explore expert views on treatment duration in aHUS and also assessed the financial and health impacts of early discontinuation.
They conducted 10 qualitative interviews with aHUS treatment experts between January and December 2023. Based on the interviews, they constructed a quantitative decision tree to estimate time on treatment and treatment- and disease-related adverse events.
The results showed 4 main themes: concerns and prior experience, high-risk vs. low-risk groups, patient preference and adherence, and funding for monitoring and re-treatment. While most experts supported treatment discontinuation, concerns over prior negative experiences and patient risk factors influenced decisions. Cost-consequence analysis highlighted financial savings from early discontinuation, though it increased TMA recurrence risk. Close monitoring reduced long-term renal injury, with one event per 100 patient-years, rising to 3 per 100 patient-years in high-risk patients with poor adherence.
Investigators highlighted the complex factors influencing treatment discontinuation in aHUS and the associated risks and benefits. Their findings emphasized the importance of careful patient monitoring.
Source: bmcnephrol.biomedcentral.com/articles/10.1186/s12882-024-03770-0
