Financial Burden in Families of Children with West Syndrome. 2022

Dhvani Raithatha, and Jitendra Kumar Sahu, and Singanamalla Bhanudeep, and Lokesh Saini, and Shankar Prinja, and Bhavneet Bharti, and Priyanka Madaan, and Saroj Kumar Rana, and Sandeep Negi
Department of Pediatrics, Postgraduate Institute of Medical Education and Research, Chandigarh, India.

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 INR 3000 (Q1, Q3, 2000, 6000). The median cost of treatment over one year was INR 27035 (Q1, Q3, 17,894, 39,591). Median direct medical and nonmedical expenses amounted to INR 18802 (Q1, Q3, 12,179, 25,580) and INR 6550 (Q1, Q3, 3500, 15,000), respectively. Seven families had catastrophic healthcare expenditure. Parental education and choice of first-line treatment were important determinants driving healthcare expenses. The age at onset of epileptic spasms, etiology, treatment lag, the initial response to treatment, and relapse following initial response did not significantly influence the illness-related expenditure by the families. CONCLUSIONS WS imposes a substantial financial burden on the families and indirectly on the healthcare system.

UI MeSH Term Description Entries
D007182 Income Revenues or receipts accruing from business enterprise, labor, or invested capital. Income Distribution,Income Generation Programs,Savings,Distribution, Income,Distributions, Income,Income Distributions,Income Generation Program,Incomes,Program, Income Generation,Programs, Income Generation
D002648 Child A person 6 to 12 years of age. An individual 2 to 5 years old is CHILD, PRESCHOOL. Children
D003430 Cross-Sectional Studies Studies in which the presence or absence of disease or other health-related variables are determined in each member of the study population or in a representative sample at one particular time. This contrasts with LONGITUDINAL STUDIES which are followed over a period of time. Disease Frequency Surveys,Prevalence Studies,Analysis, Cross-Sectional,Cross Sectional Analysis,Cross-Sectional Survey,Surveys, Disease Frequency,Analyses, Cross Sectional,Analyses, Cross-Sectional,Analysis, Cross Sectional,Cross Sectional Analyses,Cross Sectional Studies,Cross Sectional Survey,Cross-Sectional Analyses,Cross-Sectional Analysis,Cross-Sectional Study,Cross-Sectional Surveys,Disease Frequency Survey,Prevalence Study,Studies, Cross-Sectional,Studies, Prevalence,Study, Cross-Sectional,Study, Prevalence,Survey, Cross-Sectional,Survey, Disease Frequency,Surveys, Cross-Sectional
D005102 Health Expenditures The amounts spent by individuals, groups, nations, or private or public organizations for total health care and/or its various components. These amounts may or may not be equivalent to the actual costs (HEALTH CARE COSTS) and may or may not be shared among the patient, insurers, and/or employers. Expenditure,Expenditures, Health,Health Expenditure,Out Of Pocket Expenditure,Out-of-Pocket Cost,Out-of-Pocket Expense,Out-of-Pocket Payment,Expenditures,Expenditures, Direct,Expenditures, Indirect,Expenditures, Out-of-Pocket,Out-of Pocket Expenditures,Out-of-Pocket Costs,Out-of-Pocket Expenses,Out-of-Pocket Payments,Out-of-Pocket Spending,Cost, Out-of-Pocket,Costs, Out-of-Pocket,Direct Expenditure,Direct Expenditures,Expenditure, Direct,Expenditure, Health,Expenditure, Indirect,Expenditure, Out-of Pocket,Expenditure, Out-of-Pocket,Expenditures, Out of Pocket,Expenditures, Out-of Pocket,Expense, Out-of-Pocket,Expenses, Out-of-Pocket,Indirect Expenditure,Indirect Expenditures,Out of Pocket Cost,Out of Pocket Costs,Out of Pocket Expenditures,Out of Pocket Expense,Out of Pocket Expenses,Out of Pocket Payment,Out of Pocket Payments,Out of Pocket Spending,Out-of Pocket Expenditure,Out-of-Pocket Expenditure,Out-of-Pocket Expenditures,Payment, Out-of-Pocket,Payments, Out-of-Pocket,Spending, Out-of-Pocket
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D000086522 Financial Stress Stress arising from personal financial concerns. (www.cancer.gov/publications/dictionaries/cancer-terms/def/financial-stress). Economic Burden,Economic Hardship,Financial Burden,Financial Challenges,Financial Hardship,Financial Pressures,Financial Resource Strain,Financial Strain,Financial Toxicity,Insufficient Financial Resources,Socioeconomic Adversity,Adversity, Socioeconomic,Burden, Economic,Burden, Financial,Challenge, Financial,Economic Burdens,Economic Hardships,Financial Burdens,Financial Challenge,Financial Hardships,Financial Pressure,Financial Resource Strains,Financial Resource, Insufficient,Financial Strains,Financial Stresses,Financial Toxicities,Hardship, Economic,Hardship, Financial,Insufficient Financial Resource,Pressure, Financial,Resource Strain, Financial,Resource, Insufficient Financial,Socioeconomic Adversities,Strain, Financial,Strain, Financial Resource,Stress, Financial,Toxicity, Financial
D013036 Spasms, Infantile An epileptic syndrome characterized by the triad of infantile spasms, hypsarrhythmia, and arrest of psychomotor development at seizure onset. The majority present between 3-12 months of age, with spasms consisting of combinations of brief flexor or extensor movements of the head, trunk, and limbs. The condition is divided into two forms: cryptogenic (idiopathic) and symptomatic (secondary to a known disease process such as intrauterine infections; nervous system abnormalities; BRAIN DISEASES, METABOLIC, INBORN; prematurity; perinatal asphyxia; TUBEROUS SCLEROSIS; etc.). (From Menkes, Textbook of Child Neurology, 5th ed, pp744-8) Cryptogenic Infantile Spasms,Hypsarrhythmia,Infantile Spasms,Jackknife Seizures,Nodding Spasm,Salaam Seizures,Spasmus Nutans,Symptomatic Infantile Spasms,West Syndrome,Cryptogenic West Syndrome,Lightning Attacks,Salaam Attacks,Symptomatic West Syndrome,Attack, Lightning,Attacks, Lightning,Attacks, Salaam,Cryptogenic Infantile Spasm,Hypsarrhythmias,Infantile Spasm,Infantile Spasm, Cryptogenic,Infantile Spasm, Symptomatic,Infantile Spasms, Cryptogenic,Infantile Spasms, Symptomatic,Jackknife Seizure,Lightning Attack,Nodding Spasms,Seizure, Jackknife,Seizures, Jackknife,Seizures, Salaam,Spasm, Cryptogenic Infantile,Spasm, Nodding,Spasm, Symptomatic Infantile,Spasms, Cryptogenic Infantile,Spasms, Nodding,Spasms, Symptomatic Infantile,Symptomatic Infantile Spasm,Syndrome, Cryptogenic West,Syndrome, Symptomatic West,Syndrome, West,West Syndrome, Cryptogenic,West Syndrome, Symptomatic
D017281 Cost of Illness The personal cost of disease which may be economic, social, or psychological. The cost of illness may be reflected in absenteeism, productivity, response to treatment, peace of mind, or QUALITY OF LIFE. It differs from HEALTH CARE COSTS, the societal cost of providing services related to the delivery of health care. Burden Of Disease,Burden of Illness,Disease Burden,Disease Costs,Cost of Disease,Cost of Sickness,Costs of Disease,Disease Cost,Economic Burden of Disease,Sickness Cost,Burden Of Diseases,Burden, Disease,Cost, Disease,Disease Burdens,Illness Burden,Illness Burdens,Illness Cost,Illness Costs,Sickness Costs

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