The Health Economic Impact of Nephrotic Syndrome in the United States.

Background: Nephrotic syndrome (NS) is a rare kidney syndrome with high morbidity. Although a common contributor to the burden of chronic kidney disease, the direct and indirect costs of NS to patients and family caregivers are unrecognized. The objective was to characterize the direct and indirect costs of NS to patients.
Methods: Adults with NS and family caregivers of children with NS were eligible to participate if they had a diagnosis of primary NS, had disease for at least 1 year, and had no other severe health conditions. Data-collection surveys were generated with input from the Kidney Research Network Patient Advisory Board, and surveys were mailed to the eligible participants. Participants were provided $50 for the return of completed surveys. Costs were defined as either direct out-of-pocket costs or indirect costs ( e.g. , time). Descriptive statistics, including percentage and median (interquartile range [IQR]) are reported.
Results: Respondents included 28 adult patients and 17 caregivers of patients who were minors. Reported health insurance coverage included 35 (78%) with private insurance, 12 (27%) with public insurance, six (13%) with Children's Special Health Care Services, and one (2%) uninsured. Median annual direct costs were $3464 ($844-$5865) for adult patients and $1687 (IQR $1035-$4763) for caregivers. Of these costs, diet-associated costs contributed $1140 (IQR $600-$2400). The most substantial indirect cost was from the time spent planning/prepping meals (adults: 183 h/yr [IQR 114-331]; caregivers: 173 h/yr [IQR 84-205]).
Conclusions: Adults and caregivers of children with NS face substantial disease-related direct and indirect costs beyond those covered by insurance. Following replication, the study will help health care providers, systems, and payers gain a better understanding of the financial and time burden incurred by those living with NS, consider barriers when treating patients, and develop supportive strategies.
Competing Interests: D.S. Gipson reports consultancy between the University of Michigan and AstraZeneca, Boehringer-Ingelheim, Genentech, Goldfinch Bio, Roche, Travere, and Vertex (no individual consultancy agreements); research funding to the University of Michigan from BoehringerIngelheim, Goldfinch Bio, Novartis, Reata, and Travere; being a scientific advisor for or a member of AstraZeneca, Goldfinch Bio, and Vertex; and other interests/relationships with the Nephrotic Syndrome Patient Reported Outcome Consortium (public-private partnership, with Goldfinch Bio, GSK, Pfizer, and Zyversa; NephCure Kidney International). S. Massengill reports consultancy agreements with Guidepoint Network and being a scientific advisor for or a member of the Editorial Board of online Glomerular Disease Journal (Karger Publishers). All remaining authors have nothing to disclose.
(Copyright © 2022 by the American Society of Nephrology.)