ArticlePloS one2020
Economic burden of the persistent morbidity of nodding syndrome on caregivers in affected households in Northern Uganda.
Article in PloS one, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
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Who cites it
5 citing papers in PubMed, 11 citations in OpenAlex.
- Nodding Syndrome: Shifting the Focus from Cause to Treatment.The American journal of tropical medicine and hygiene · 2026Review
- Excitatory amino acids, possible causative agents of nodding syndrome in eastern Africa.Tropical medicine and health · 2023Article
- 'There Were Moments We Wished She Could Just Die': The Highly Gendered Burden of Nodding Syndrome in Northern Uganda.Qualitative health research · 2022Article
- Cost-effectiveness analysis of rituximab versus natalizumab in patients with relapsing remitting multiple sclerosis.BMC health services research · 2022Article
- Household poverty, schooling, stigma and quality of life in adolescents with epilepsy in rural Uganda.Epilepsy & behavior : E&B · 2021Article
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Authors and funding
11 authors at 7 institutions in 4 countries.
Funding
Abstract
backgroundNodding 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.
methodsA 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.
resultsDirect 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.
conclusionDirect 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.
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