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Economic burden of the persistent morbidity of nodding syndrome on caregivers in affected households in Northern Uganda.

ABSTRACT: BACKGROUND:Nodding syndrome (NS), is an unexplained form of epilepsy which leads to stunted growth, cognitive decline, and a characteristic nodding of the head. Current data about its impact on households in Uganda is scarce. Therefore, this study aims to assess the economic burden of the persistent morbidity of NS on caregivers in affected households in Northern Uganda. METHODS:A cross-sectional cost-of-care study was conducted from January 2019 to February 2019 in Lakwela village-Northern Uganda in 14 households, who are members of a community-based organization (CBO) established in the village with the support of a Japanese research team, (Uganda-Japan Nodding Syndrome Network). Data was collected through questionnaires. Both direct (medical and non-medical) and indirect (informal care) costs of caregiving were assessed. Indirect costs were valued using the human-capital method as loss of production. RESULTS:Direct costs constituted a higher proportion of costs for NS households, accounting for on average 7.7% of household expenditure. The annual weighted mean cost per NS patient was estimated at 27.6 USD (26.4 USD direct costs, 96.2% and 1.2 USD indirect cost, 3.8%). Average time spent on informal caregiving was 4.4 ±1.7 (standard deviation) hours/week with an estimated annual informal caregiving cost of 24.85 USD and gross domestic product (GDP) loss of 412.40 USD. CONCLUSION:Direct costs due to NS are still high among households in this study. More studies are needed to investigate measures that could help bring down these costs and equally reduce the day-to-day disruption of caregiver's activities; consequently, improving the lives of these affected households and communities.

SUBMITTER: Latio LSY

PROVIDER: S-EPMC7523991 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Economic burden of the persistent morbidity of nodding syndrome on caregivers in affected households in Northern Uganda.

Latio Lugala Samson Yoane LSY Nam Nguyen Hai NH Shah Jaffer J Smith Chris C Sakai Kikuko K Stonewall Shaban Kato K Idro Richard R Makoto Nishi N Huy Nguyen Tien NT Hamano Shinjiro S Moji Kazuhiko K

PloS one 20200929 9

<h4>Background</h4>Nodding syndrome (NS), is an unexplained form of epilepsy which leads to stunted growth, cognitive decline, and a characteristic nodding of the head. Current data about its impact on households in Uganda is scarce. Therefore, this study aims to assess the economic burden of the persistent morbidity of NS on caregivers in affected households in Northern Uganda.<h4>Methods</h4>A cross-sectional cost-of-care study was conducted from January 2019 to February 2019 in Lakwela villag ...[more]

PMID: 32991607

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Project description:BackgroundOne of the three main targets of the World Health Organization (WHO) End TB Strategy (2015-2035) is that no tuberculosis (TB) patients or their households face catastrophic costs (defined as exceeding 20% of the annual household income) because of the disease. Our study seeks to determine, as a baseline, the magnitude and main drivers of the costs associated with TB disease for patients and their households and to monitor the proportion of households experiencing catastrophic costs in Brazil.MethodsA national cross-sectional cluster-based survey was conducted in Brazil in 2019-2021 following WHO methodology. TB patients of all ages and types of TB were eligible for the survey. Adult TB patients and guardians of minors (<18 years old) were interviewed once about costs, time loss, coping measures, income, household expenses, and asset ownership. Total costs, including indirect costs measured as reported household income change, were expressed as a percentage of annual household income. We used descriptive statistics to analyze the cost drivers and multivariate logistic regression to determine factors associated with catastrophic costs.ResultsWe interviewed 603 patients, including 538 (89%) with drug-sensitive (DS) and 65 (11%) with drug-resistant (DR) TB. Of 603 affected households, 48.1% (95%CI: 43-53.2) experienced costs above 20% of their annual household income during their TB episode. The proportion was 44.4% and 78.5% among patients with DS- and DR-TB, respectively. On average, patients incurred costs of US$1573 (95%CI: 1361.8-1785.0) per TB episode, including pre-diagnosis and post-diagnosis expenses. Key cost drivers were post-diagnosis nutritional supplements (US$317.6, 95%CI: 232.7-402.6) followed by medical costs (US$85.5, 95%CI: 54.3-116.5) and costs of travel for clinic visits during treatment (US$79.2, 95%CI: 61.9-96.5). In multivariate analysis, predictors of catastrophic costs included positive HIV status (aOR = 3.0, 95%CI:1.1-8.6) and self-employment (aOR = 2.7, 95%CI:1.1-6.5); high education was a protective factor (aOR = 0.1, 95%CI:0.0-0.9).ConclusionsAlthough the services offered to patients with TB are free of charge in the Brazilian public health sector, the availability of free diagnosis and treatment services does not alleviate patients' financial burden related to accessing TB care. The study allowed us to identify the costs incurred by patients and suggest actions to mitigate their suffering. In addition, this study established a baseline for monitoring catastrophic costs and fostering a national policy to reduce the costs to patients for TB care in Brazil.

Project description:BackgroundAlthough tuberculosis (TB) care is free in Tanzania, TB-associated costs may compromise access to services and treatment adherence resulting in poor outcomes and increased risk of transmission in the community. TB can impact economically patients and their households. We assessed the economic burden of TB on patients and their households in Tanzania and identified cost drivers to inform policies and programs for potential interventions to mitigate costs.MethodsWe conducted a nationally representative cross-sectional survey using a standard methodology recommended by World Health Organization. TB patients of all ages and with all types of TB from 30 clusters across Tanzania were interviewed during July - September 2019. We used the human capital approach to assess the indirect costs and a threshold of 20% of the household annual expenditure to determine the proportion of TB-affected households experiencing catastrophic cost. We descriptively analyzed the cost data and fitted multivariable logistic regression models to identify potential predictors of catastrophic costs.ResultsOf the 777 TB-affected households, 44.9% faced catastrophic costs due to TB. This proportion was higher (80.0%) among households of patients with multi-drug resistant TB (MDR-TB). Overall, cost was driven by income loss while accessing TB services (33.7%), nutritional supplements (32.6%), and medical costs (15.1%). Most income loss was associated with hospitalization and time for picking up TB drugs. Most TB patients (85.9%) reported worsening financial situations due to TB, and over fifty percent (53.0%) borrowed money or sold assets to finance TB treatment. In multivariable analysis, the factors associated with catastrophic costs included hospitalization (adjusted odds ratio [aOR] = 34.9; 95% confidence interval (CI):12.5-146.17), living in semi-urban (aOR = 1.6; 95% CI:1.0-2.5) or rural areas (aOR = 2.6; 95% CI:1.8-3.7), having MDR-TB (aOR = 3.4; 95% CI:1.2-10.9), and facility-based directly-observed treatment (DOT) (aOR = 7.2; 95% CI:2.4-26.6).ConclusionWe found that the cost of TB care is catastrophic for almost half of the TB-affected households in Tanzania; our findings support the results from other surveys recently conducted in sub-Saharan Africa. Collaborative efforts across health, employment and social welfare sectors are imperative to minimize household costs due to TB disease and improve access to care, patient adherence and outcomes.

Project description:BackgroundNodding syndrome is a neurological disorder which had affected about 3000 children with over 170 deaths in northern Uganda by 2012. With limited data on health seeking, the study aimed to assess the health seeking behavior and associated factors among caretakers of children with nodding syndrome in Pader district.MethodsA mixed methods cross sectional study was conducted in July 2013 among 249 caretakers of children with nodding syndrome in three sub-counties of Pader. Respondents were consecutively interviewed using semi-structured questionnaires. Eleven key informants were additionally interviewed. We determined the associations of various factors with health care seeking and obtained adjusted odds ratios and 95% confidence intervals using logistic regression model. Quantitative data was analysed using Stata version 12 while qualitative data was analysed manually and quotes reported.ResultsMost caretakers, 78.3% (195/249) sought care first from a health facility, 12.9% (32/249) visited traditional healers and 8.8% (22/249) self-medicated. Of those who sought care from a health facility, 50% sought care after a month. Factors associated with improved care seeking included: Time taken to reach care 1-3 hours; adjusted odds ratio = 6.4 (95% CI = 2.96-14.03), time spent in care above five years; adjusted odds ratio = 12.0 (95% CI: 1.24-117.73) and changed care seeking place; adjusted odds ratio = 17.2 (95% CI: 3.64-81.67).Conclusion/ recommendationCaretakers sought care from multiple places. One in five caretakers still sought care outside a formal health facility. Many respondents who sought care first from health facilities went late, at least one month after symptoms onset. Factors associated with health seeking included distance, duration in treatment and not having changing care provider. There is need for massive sensitization of community to enhance prompt care seeking. More research is needed to elucidate the cause, thus finding the treatment for nodding syndrome, to prevent "wandering in hope".

Project description:BackgroundNon-communicable diseases (NCDs) are the leading global cause of death and disproportionately concentrate among those living in low-income and middle-income countries. However, its economic impact on households remains less well known in the Indian context. This study aims to assess the economic impact of NCDs in terms of out-of-pocket expenditure (OOPE) and its catastrophic impact on NCDs affected households in India.Materials and methodsData were collected from the 75th round of the National Sample Survey Office, Government of India, conducted in the year 2017-18. This is the latest round of data available on health, which constitutes a sample of 113,823 households. The collection of data is based on a stratified multi-stage sampling method. Generalised Linear Regression model was employed to identify the socio-economic covariates associated with the catastrophic health expenditure (CHE) on hospitalisation.ResultsThe result shows a higher burden of OOPE on NCDs affected households. The mean expenditure by NCDs households in public hospitals is INR 13,170 which is more than twice as compared to the non-NCDs households INR 6,245. Particularly, the proportion of total medical expenditure incurred on medicines (0.39) and diagnostics (0.15) is troublesome for households with NCDs, treated in public hospitals. Moreover, results from the generalised linear regression model confirm the significant relationship between CHE with residence, caste, religion, household size, and economic status of households. The intensity of CHE is more for the households who are poor, drinking unsafe water, using firewood as cooking fuel, and household size of 1-5 members.ConclusionTherefore, an urgent need for a prevention strategy should be made by the government to protect households from the economic burden of NCDs. Specifically, to reduce the burden of CHE associated with NCDs, a customised disease-specific health insurance package should be introduced by the government of India in both public and private facilities.

Project description:BackgroundPrimary health care facilities frequently manage dengue cases on an ambulatory basis for the duration of the patient's illness. There is a great opportunity for specific messaging, aimed to reduce dengue virus (DENV) transmission in and around the home, to be directly targeted toward this high-risk ambulatory patient group, as part of an integrated approach to dengue management. The extent however, to which physicians understand, and can themselves effectively communicate strategies to stop focal DENV transmission around an ambulatory dengue case is unknown; the matter of patient comprehension and recollection then ensues. In addition, the effectiveness of N,N-diethyl-3-methylbenzamide (DEET)-based insect repellent in protecting dengue patients from Aedes aegypti mosquitoes' bites has not been investigated.MethodologyA knowledge, attitude and practice (KAP) survey, focusing on the mechanisms of DENV transmission and prevention, was performed using semi-structured questionnaires. This survey was targeted towards the patients and family members providing supportive care, and physicians routinely involved in dengue patient management in Southern Vietnam. An additional clinical observational study was conducted to measure the efficacy of a widely-used 13% DEET-based insect repellent to repel Ae. aegypti mosquitoes from the forearms of dengue cases and matched healthy controls.Principal findingsAmong both the physician (n = 50) and patient (n = 49) groups there were several respondents lacking a coherent understanding of DENV transmission, leading to some inappropriate attitudes and inadequate acute preventive practices in the household. The application of insect repellent to protect patients and their relatives from mosquito bites was frequently recommended by majority of physicians (78%) participating in the survey. Nevertheless, our tested topical application of 13% DEET conferred only ~1hr median protection time from Ae. aegypti landing. This is notably shorter than that advertised on the manufacturer's label. No differences in landing time between febrile dengue cases or matched healthy controls (n = 19 experiments) were observed.Conclusion/significanceOur study identifies missed opportunities for primary care physicians to improve public health through communication of strategies that could prevent focal dengue transmission in and around a case household. We advocate better access to more efficient communication methods for physicians and auxilliary health workers, supporting to educate those at high risk of DENV transmission. Our empirical testing of a widely-available 13% DEET-based repellent was limited in its protective efficacy against Ae. aegypti mosquito bites, and therefore DENV transmission, suggesting more frequent application is necessary to be beneficial.

Dataset Information

Economic burden of the persistent morbidity of nodding syndrome on caregivers in affected households in Northern Uganda.

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Economic burden of the persistent morbidity of nodding syndrome on caregivers in affected households in Northern Uganda.

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