Facilitating Evaluation of Hemolytic Uremic Syndrome Long-Term Health Outcomes Through Social Media Support Groups.

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, tr

SUBMITTER: Beczkiewicz ATE 

PROVIDER: S-EPMC7719744 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature