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, 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.

Living with Atypical Hemolytic Uremic Syndrome in the Netherlands: Patient and Family Perspective

“…Although limited, data on psychological outcomes of aHUS indicated high levels of anxiety in 44% of patients and overall stress symptoms in almost all patients (97%) and relatives. 16 , 17 A study by Azoulay et al. 13 confirmed these findings, reporting high rates of mental health symptoms, posttraumatic stress disorder, and quality of life alterations in patients with aHUS up to years after intensive care unit discharge.…”

The Prevalence and Incidence of Hemolytic Uremic Syndrome: A Systematic Review

“…First, we extrapolated data from the Urban Medical Insurance databases to determine our estimate of the incidence of HUS. According to certain studies, STEC-HUS may be more common in rural areas than in metropolitan areas [8,[20][21][22]. Additionally, there is a decreased likelihood of gastroenteric infections with STEC due to better hygienic conditions in urban regions [31].…”

“…It's important to note that the incidence and prevalence of HUS can vary depending on the condition's underlying cause. For example, HUS can be caused by infection with certain strains of E. coli bacteria, which can be more prevalent in certain geographical regions or populations [ 20 , 25 , 27 ]. Other causes of HUS include certain medications, autoimmune disorders, and genetic mutations.…”

“…Children had the greatest incidence rate, with 5.08 per 100,000 person-years annually. But earlier studies from Europe and North America revealed that children under five were the most often impacted, and the age-specific incidence of HUS is comparable to that of STEC [ 20 - 22 ]. HUS incidence rates in children under the age of five were comparable to those in Australia but lower than those in Western Europe and the United States.…”

Trends and Outcomes of Hospitalizations Due to Hemolytic Uremic Syndrome: A National Perspective

“…In our study, 58.6% of patients were transferred from other hospitals or SNFs. In a cross-sectional study, 71.6% of patients were transferred from another SNF with reported reasons being the need for a pediatric specialist (49.1%), the need for a renal specialist (23.6%), the need for dialysis unavailable at the initial facility (23.6%), and rural or small hospital unable to provide necessary care (11.3%) [ 27 ].…”