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      The role of economic factors in shaping and constituting the household burden of neglected tropical diseases of the skin: Qualitative findings from Ghana and Ethiopia

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          Abstract

          Tracers of health system equity, neglected tropical diseases (NTDs) disproportionately affect marginalized populations. NTDs that manifest on the skin – “skin NTDs” – are associated with scarring, disfigurement, physical disability, social exclusion, psychological distress, and economic hardship. To support development and evaluation of appropriate intervention strategies, we aimed to improve understanding of the role of economic factors in shaping and constituting the burden that skin NTDs place on households. We collected data in 2021 in two predominantly rural districts: Atwima Mponua in Ghana (where Buruli ulcer, yaws, and leprosy are endemic) and Kalu in Ethiopia (where cutaneous leishmaniasis and leprosy are endemic). We conducted interviews (n = 50) and focus group discussions (n = 14) that explored economic themes with affected individuals, caregivers, and community members and analysed the data thematically using a pre-defined framework. We found remarkable commonalities across countries and diseases. We developed a conceptual framework which illustrates skin NTDs' negative economic impact, including financial costs of care-seeking and reductions in work and schooling; categorises coping strategies by their degree of risk-pooling; and clarifies the mechanisms through which skin NTDs disproportionately affect the poorest. Despite health insurance schemes in both countries, wide-ranging, often harmful coping strategies were reported. Traditional healers were often described as more accessible, affordable and offering more flexible payment terms than formal health services, except for Ethiopia's well-established leprosy programme. Our findings are important in informing strategies to mitigate the skin NTD burden and identifying key drivers of household costs to measure in future evaluations. To reduce skin NTDs' impact on households' physical, mental, and economic wellbeing, intervention strategies should address economic constraints to prompt and effective care-seeking. While financial support and incentives for referrals and promotion of insurance enrolment may mitigate some constraints, structural interventions that decentralise care may offer more equitable and sustainable access to skin NTD care.

          Highlights

          • Neglected tropical diseases (NTDs) of the skin place an economic burden on households.

          • Costs influence care-seeking choices and encourage use of traditional healers.

          • Economic coping strategies used indicate inadequate financial risk protection.

          • Our conceptual framework describes the role of economic factors in the skin NTD burden.

          • Interventions must tackle economic factors inhibiting prompt and effective treatment.

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          Most cited references55

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          Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups.

          Qualitative research explores complex phenomena encountered by clinicians, health care providers, policy makers and consumers. Although partial checklists are available, no consolidated reporting framework exists for any type of qualitative design. To develop a checklist for explicit and comprehensive reporting of qualitative studies (in depth interviews and focus groups). We performed a comprehensive search in Cochrane and Campbell Protocols, Medline, CINAHL, systematic reviews of qualitative studies, author or reviewer guidelines of major medical journals and reference lists of relevant publications for existing checklists used to assess qualitative studies. Seventy-six items from 22 checklists were compiled into a comprehensive list. All items were grouped into three domains: (i) research team and reflexivity, (ii) study design and (iii) data analysis and reporting. Duplicate items and those that were ambiguous, too broadly defined and impractical to assess were removed. Items most frequently included in the checklists related to sampling method, setting for data collection, method of data collection, respondent validation of findings, method of recording data, description of the derivation of themes and inclusion of supporting quotations. We grouped all items into three domains: (i) research team and reflexivity, (ii) study design and (iii) data analysis and reporting. The criteria included in COREQ, a 32-item checklist, can help researchers to report important aspects of the research team, study methods, context of the study, findings, analysis and interpretations.
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            Leishmaniasis Worldwide and Global Estimates of Its Incidence

            As part of a World Health Organization-led effort to update the empirical evidence base for the leishmaniases, national experts provided leishmaniasis case data for the last 5 years and information regarding treatment and control in their respective countries and a comprehensive literature review was conducted covering publications on leishmaniasis in 98 countries and three territories (see ‘Leishmaniasis Country Profiles Text S1, S2, S3, S4, S5, S6, S7, S8, S9, S10, S11, S12, S13, S14, S15, S16, S17, S18, S19, S20, S21, S22, S23, S24, S25, S26, S27, S28, S29, S30, S31, S32, S33, S34, S35, S36, S37, S38, S39, S40, S41, S42, S43, S44, S45, S46, S47, S48, S49, S50, S51, S52, S53, S54, S55, S56, S57, S58, S59, S60, S61, S62, S63, S64, S65, S66, S67, S68, S69, S70, S71, S72, S73, S74, S75, S76, S77, S78, S79, S80, S81, S82, S83, S84, S85, S86, S87, S88, S89, S90, S91, S92, S93, S94, S95, S96, S97, S98, S99, S100, S101’). Additional information was collated during meetings conducted at WHO regional level between 2007 and 2011. Two questionnaires regarding epidemiology and drug access were completed by experts and national program managers. Visceral and cutaneous leishmaniasis incidence ranges were estimated by country and epidemiological region based on reported incidence, underreporting rates if available, and the judgment of national and international experts. Based on these estimates, approximately 0.2 to 0.4 cases and 0.7 to 1.2 million VL and CL cases, respectively, occur each year. More than 90% of global VL cases occur in six countries: India, Bangladesh, Sudan, South Sudan, Ethiopia and Brazil. Cutaneous leishmaniasis is more widely distributed, with about one-third of cases occurring in each of three epidemiological regions, the Americas, the Mediterranean basin, and western Asia from the Middle East to Central Asia. The ten countries with the highest estimated case counts, Afghanistan, Algeria, Colombia, Brazil, Iran, Syria, Ethiopia, North Sudan, Costa Rica and Peru, together account for 70 to 75% of global estimated CL incidence. Mortality data were extremely sparse and generally represent hospital-based deaths only. Using an overall case-fatality rate of 10%, we reach a tentative estimate of 20,000 to 40,000 leishmaniasis deaths per year. Although the information is very poor in a number of countries, this is the first in-depth exercise to better estimate the real impact of leishmaniasis. These data should help to define control strategies and reinforce leishmaniasis advocacy.
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              Neglected Tropical Diseases: Epidemiology and Global Burden

              More than a billion people—one-sixth of the world’s population, mostly in developing countries—are infected with one or more of the neglected tropical diseases (NTDs). Several national and international programs (e.g., the World Health Organization’s Global NTD Programs, the Centers for Disease Control and Prevention’s Global NTD Program, the United States Global Health Initiative, the United States Agency for International Development’s NTD Program, and others) are focusing on NTDs, and fighting to control or eliminate them. This review identifies the risk factors of major NTDs, and describes the global burden of the diseases in terms of disability-adjusted life years (DALYs).
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                Author and article information

                Contributors
                Journal
                Soc Sci Med
                Soc Sci Med
                Social Science & Medicine (1982)
                Pergamon
                0277-9536
                1873-5347
                1 September 2024
                September 2024
                : 356
                : 117094
                Affiliations
                [a ]Armauer Hansen Research Institute, Addis Ababa, Ethiopia
                [b ]Kumasi Centre for Collaborative Research, Kwame Nkrumah University of Science & Technology, Kumasi, Ghana
                [c ]Department of Economics, Kwame Nkrumah University of Science & Technology, Kumasi, Ghana
                [d ]Noguchi Memorial Institute for Medical Research, University of Ghana, Accra, Ghana
                [e ]Faculty of Public Health and Policy, London School of Hygiene & Tropical Medicine, London, United Kingdom
                [f ]Department of Epidemiology and Biostatistics, Institute of Public Health, College of Medicine and Health Sciences, University of Gondar, Gondar, Ethiopia
                [g ]Department of Sociology and Anthropology, University of Cape Coast, Cape Coast, Ghana
                [h ]Faculty of Infectious and Tropical Diseases, London School of Hygiene & Tropical Medicine, London, United Kingdom
                [i ]School of Public Health, Addis Ababa University, Addis Ababa, Ethiopia
                Author notes
                [* ]Corresponding author. Kumasi Centre for Collaborative Research, Kwame Nkrumah University of Science & Technology, Kumasi, Ghana. jnovignon@ 123456knust.edu.gh
                [1]

                Joint first authors.

                Article
                S0277-9536(24)00547-1 117094
                10.1016/j.socscimed.2024.117094
                11370647
                39032192
                8ca0b97e-bb00-4d85-8d36-9688395e2717
                © 2024 The Authors

                This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).

                History
                : 30 November 2023
                : 9 April 2024
                : 3 July 2024
                Categories
                Article

                Health & Social care
                ghana,ethiopia,economic burden,neglected tropical diseases,household costs,out-of-pocket,insurance,financial risk protection

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