Dataset Information

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 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.

Conclusion

WS imposes a substantial financial burden on the families and indirectly on the healthcare system.

SUBMITTER: Raithatha D

PROVIDER: S-EPMC8149262 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:ImportanceThe Affordable Care Act (ACA) sought to improve access and affordability of health insurance. Although most ACA policies targeted childless adults, the extent to which these policies also impacted families with children remains unclear.ObjectiveTo examine changes in health care-related financial burden for US families with children before and after the ACA was implemented based on income eligibility for ACA policies.Design, setting, and participantsData used for this cohort study were obtained from the 2000-2017 Medical Expenditure Panel Survey, a nationally representative, population-based survey. Multivariable regression with a difference-in-differences estimator was used to examine changes in family financial burden before and after ACA implementation according to income-based ACA eligibility groups (≤138% [lowest-income], 139%-250% [low-income], 251%-400% [middle-income], and >400% [high-income] federal poverty level). The cohort included 92 165 families with 1 or more children (age ≤18 years) and 1 or more adult parents/guardians.ExposuresIncome-based eligibility groups during post-ACA years (calendar years 2014-2017) vs pre-ACA years (calendar years 2000-2013).Main outcomes and measuresFamily annual out-of-pocket (OOP) health care and premium cost burden relative to income. High OOP burden was determined based on a previously validated algorithm with relative cost thresholds that vary across incomes, and extreme OOP burden was defined as costs exceeding 10% of income. Premiums exceeding 9.5% of income were classified as burdensome and premiums relative to median household income defined an unaffordability index.ResultsCompared with high-income families who experienced a lesser change post-ACA implementation (high OOP burden, 1.1% pre-ACA vs 0.9% post-ACA), the lowest-income families saw the greatest reduction in high OOP burden (35.6% pre-ACA vs 23.7% post-ACA; difference-in-differences: -11.4%; 95% CI, -13.2% to -9.5%) followed by low-income families (24.6% pre-ACA vs 17.3% post-ACA, difference-in-differences: -6.8%; 95% CI, -8.7% to -4.9%) and middle-income families (6.1% pre-ACA vs 4.6% post-ACA, difference-in-differences: -1.2%; 95% CI, -2.3% to -0.01%). Although premiums rose for all groups, premium unaffordability was the least exacerbated for the lowest-, low-, and middle-income families compared with higher-income families.Conclusions and relevanceThe findings of this study suggest that low- and middle-income families with children who were eligible for ACA Medicaid expansions and Marketplace subsidies experienced greater reductions in health care-related financial burden after the ACA was implemented compared with families with higher incomes. However, despite ACA policies, many low- and middle-income families with children appear to continue to face considerable financial burden from premiums and OOP costs.

Project description:The impact of user-fee policies on the equity of health care utilization and households' financial burdens has remained largely unexplored in Latin American and the Caribbean, as well as in upper-middle-income countries. This paper assesses the short- and long-term impacts of Jamaica's user-fee-removal for children in 2007.This study utilizes 14 rounds of data from the Jamaica Survey of Living Conditions (JSLC) for the periods 1996 to 2012. JSLC is a national household survey, which collects data on health care utilization and among other purposes for planning. Interrupted time series (ITS) analysis was used to examine the immediate impact of the user-fee-removal policy on children's health care utilization and households' financial burdens, as well as the impact in the medium- to long-term.Immediately following the implementation of user-fee-removal, the odds of seeking for health care if the children fell ill in the past 4 weeks increased by 97% (odds ratio 2.0, 95% confidence interval (CI) 1.1 to 3.5, P?=?0.018). In the short-term (2007-2008), health care utilization increased at a faster rate among children not in poverty than children in poverty; while this gap narrowed after 2008. There was minimal difference in health care utilization across wealth groups in the medium- to long-term. The household's financial burden (health expenditure as a share of household's non-food expenditures) reduced by 6 percentage points (95% CI: -11 to -1, P?=?0.020) right after the policy was implemented and kept at a low level. The difference in financial burden between children in poverty and children not in poverty shrunk rapidly after 2007 and remained small in subsequent years.User-fee-removal had a positive impact on promoting health care utilization among children and reducing their household health expenditures in Jamaica. The short-term and the medium- to long-term results have different indications: In the short-term, the policy deteriorated the equity of access to health care for children, while the equity status improved fast in the medium- to long-term.

Project description:IntroductionPoverty and deprivation can harm children's future health, learning, economic productivity and societal participation. The Australian Healthier Wealthier Families project seeks to reduce the childhood inequities caused by poverty and deprivation by creating a systematic referral pathway between two free, community-based services: universal, well-child nursing services, which provide health and development support to families with children from birth to school entry, and financial counselling. By adapting the successful Scottish 'Healthier Wealthier Children' model, the objectives of this Australian pilot are to test the (1) feasibility of systematising the referral pathway, and (2) short-term impacts on household finances, caregiver health, parenting efficacy and financial service use.Methods and analysisThis pilot randomised controlled trial will run in three sites across two Australian states (Victoria and New South Wales), recruiting a total of 180 participants. Nurses identify eligible caregivers with a 6-item, study-designed screening survey for financial hardship. Caregivers who report one or more risk factors and consent are randomised. The intervention is financial counselling. The comparator is usual care plus information from a government money advice website. Feasibility will be evaluated using the number/proportion of caregivers who complete screening, consent and research measures, and access financial counselling. Though powered to assess feasibility, impacts will be measured 6 months post-enrolment with qualitative interviews and questionnaires about caregiver-reported income, loans and costs (adapted from national surveys, for example, the Household, Income and Labour Dynamics in Australia Survey); health (General Health Questionnaire 1, EuroQol five-dimensional questionnaire, Depression, Anxiety, Stress Scale short-form); efficacy (from the Longitudinal Study of Australian Children); and financial service use (study-designed) compared between arms.Ethics and disseminationEthics committees of the Royal Children's Hospital (HREC/57372/RCHM-2019) and South West Sydney Local Health District (2019/ETH13455) have approved the study. Participants and stakeholders will receive results through regular communication channels comprising meetings, presentations and publications.Trial registration numberACTRN12620000154909; prospectively registered. Pre-results.