Abstract
Individual burden and cost of hemolytic uremic syndrome (HUS)—a medical condition characterized by acute kidney failure—can be substantial when accounting for long-term health outcomes (LTHOs). Because of the low incidence of HUS, evaluation of associated LTHOs is often restricted to physician and outbreak cohorts, both of which may not be representative of all HUS cases. This exploratory study recruited participants from private social media support groups for families of HUS cases to identify potential LTHOs and costs of HUS that are not currently measured. Additionally, this study sought to identify case characteristics that may confound or modify these LTHOs and costs of HUS. Respondents self-selected to complete an online cross-sectional survey on acute and chronic illness history, treatments, and public health follow-up for HUS cases. Posttraumatic stress among respondents (typically case parents) was also evaluated. Responses were received for 74 HUS cases from 71 families representing all geographic regions, and levels of urbanicity within the US self-reported symptoms were typical for HUS, while 35.1% of cases reported antibiotic treatment at any point during the acute illness. Hospital transfers were reported by 71.6% of cases introducing possible delays to care. More than 70% of cases reported experiencing at least one LTHO, with 45% of cases reporting renal sequelae. Posttraumatic stress symptoms were frequently reported by respondents indirectly affected by HUS. Potentially large economic costs that are not addressed in existing analyses were identified including both financial and more general welfare losses (lost utility). While biases in the study design limit the generalizability of results to all HUS cases, this study provides new insights into unmeasured LTHOs and costs associated with HUS. These results suggest that robustly designed cohort studies on HUS should include measures of psychosocial impacts on both the affected individual and their family members.
Highlights
Hemolytic uremic syndrome (HUS) is a medical condition characterized by acute kidney failure resulting from hemolytic anemia and thrombocytopenia [1,2,3]
HUS is commonly associated with Shiga toxin–producing Escherichia coli (STEC) infections, and 4–17% of STEC O157:H7 illnesses are estimated to progress to HUS [4]
Ten surveys were excluded from analyses because of no report of official HUS diagnosis by a medical provider resulting in a final study population of 74 HUS cases from among 71 families
Summary
Hemolytic uremic syndrome (HUS) is a medical condition characterized by acute kidney failure resulting from hemolytic anemia and thrombocytopenia [1,2,3]. HUS is commonly associated with Shiga toxin–producing Escherichia coli (STEC) infections, and 4–17% of STEC O157:H7 illnesses are estimated to progress to HUS [4]. The incidence of HUS in the United States is relatively low with the Foodborne Diseases Active Surveillance Network (FoodNet) identifying 54 cases (0.49 cases per 100,000 persons) of pediatric HUS in 2017 [5]. The individual burden of HUS can be quite substantial. The economic burden of HUS is estimated to be $541,695 per case [8], but many of the long-term health outcomes (LTHOs) associated with HUS [9, 10] have not been included in these estimates because of insufficient evidence. The individual burden of HUS may be substantially higher
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