Financial Burden in Families of Children with West Syndrome

Abstract

Objective To evaluate the illness-related expenditure by families of children with West syndrome (WS) during the first year of illness and to explore the potential determinants of the financial drain. Methods This cross-sectional study was conducted at a tertiary care hospital between July 2018 and June 2020. Eighty-five children with WS who presented within one year from the onset of epileptic spasms were included. The details of the treatment costs (direct medical and nonmedical) incurred during the first year from the onset of epileptic spasms were noted from a parental interview and case record review. Unit cost was fixed for drugs and specific services. Total cost was estimated by multiplying the unit cost by the number of times a drug or service was availed. The determinants of the financial burden were also explored. Results The median monthly per-capita income of the enrolled families (n = 85) was

Treatment of West Syndrome: From Clinical Efficacy to Cost-Effectiveness, the Juggernaut Rolls On

“…In the current study by Raithatha et al [3], around twothird of the expenditures were direct and rest were indirect. The direct expenditures included cost of drug, hospital visits (both in-and outpatient) and rehabilitation.…”

“…Oral prednisolone costs one-third of ACTH; even then families of patients treated with prednisolone spent more than 10% of their total income, suggesting indirect costs were significant. The expenditure was significantly less in families hailing from the adjoining states and those receiving financial assistance through various government schemes [3]. All these facts indicate that in a developing country like ours, in chronic diseases like WS, indirect expenditures form a considerable fraction of the economic burden faced by the family.…”

“…However, WS is a chronic disease and in a developing country like India, the financial implications for a family are not just limited to direct medical expenditures (related to prevention, diagnosis, treatment, and rehabilitation), but include indirect (travel to healthcare facility, lodging, loss of livelihood) and intangible (psychosocial impact of the illness) facets as well. The current study is the first of its kind from India which has attempted to quantify the financial burden of WS on families [3].…”

Cost-effectiveness of adrenocorticotropic hormone injection and oral prednisolone in patients with West syndrome: A comparative analysis

“…Moreover, the economic model considered all these input variables, and changing these input variables in the deterministic sensitivity analysis did not change the direction of the cost-effectiveness analysis result. In the study by Raithatha et al [27] also, the cost in ACTH group was significantly higher than prednisolone group and ACTH was preferred mainly by parents belonging to higher SES. Due to better health-care awareness, they were more likely to report early, which is an important prognostic factor for achieving spasm freedom, and were likely to have better compliance with advised treatment.…”

“…The overall expenditure in our study in the ACTH group was compatible with the other study from North India exploring financial burden in the same cohort by Raithatha et al . [ 27 ] (INR 27035 yearly). However, it is significantly higher than the cost in the oral prednisolone group, which might be because the majority of patients received ACTH as first-line medication in their study (probably due to better financial status of attending caregivers).…”