The Patient-Reported Outcomes Measurement Information System perspective of adults with long-standing atypical hemolytic uremic syndrome
In this first study of PROs in patients with long-standing aHUS in the era of complement-directed therapies, patients reported a chronically impaired global health status with reduced physical and cognitive function and higher levels of fatigue, anxiety, depression, and sleep disturbances compared with the general population. Our data underscore that aHUS is a multisystem disease that may be associated with persistent symptoms even during periods of hematologic and renal quiescence.
Authors
- Jenna Brown (ORCID: https://orcid.org/0000-0002-7789-4175)
- Keith R. McCrae (ORCID: https://orcid.org/0000-0001-7340-475X)
- Anne Hubben (ORCID: https://orcid.org/0000-0001-7382-2222)
- Shruti Chaturvedi (ORCID: https://orcid.org/0000-0001-6832-2389)
- Len Woodward
- Linda Burke
- Clare Martin
Institutions
- Cleveland Clinic (US)
- Johns Hopkins University (US)
- Johns Hopkins Medicine (US)
- Action for ME (GB)
- Johns Hopkins Bayview Medical Center (US)
- National Blood Clot Alliance (US)
Publication Details
- Journal
- Research and Practice in Thrombosis and Haemostasis
- Published
- 2025-10-15
- DOI
- https://doi.org/10.1016/j.rpth.2025.103224
- Primary Topic
- Iron Metabolism and Disorders
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Akershus Universitetssykehus
- National Institutes of Health