Financial toxicity of patients affected by leprosy: a scoping review

Objectives To map and synthesise the available evidence on financial toxicity among individuals affected by leprosy and to identify knowledge gaps relevant to health systems and social protection policies in endemic settings. Methods A scoping review following the Joanna Briggs Institute methodology and PRISMA-ScR guidelines was conducted (OSF: https://osf.io/pzf45). Searches were performed between March and April 2025 in seven databases (PubMed, Scopus, Embase, Cochrane, Web of Science, BDENF and LILACS) and grey literature sources (Science.gov, CAPES, Google Scholar, WorldCat and the National Portal of Electronic Theses and Dissertations). Eligible studies were original research published between 2015 and 2025 addressing economic burden, out-of-pocket expenditure, catastrophic health expenditure, income loss or other indicators of financial hardship, such as employment instability, productivity loss, food insecurity, housing vulnerability, indebtedness, and barriers to education, among people affected by leprosy. No restrictions were applied regarding study design or geographic setting. However, the studies included in the review were conducted in the following countries: Brazil, Ethiopia, India, Indonesia, Liberia, Mozambique, Nepal, and Uganda. Two reviewers independently screened and extracted data, which were synthesised descriptively to identify the main dimensions of financial toxicity and relevant knowledge gaps for health systems and social protection policies in endemic areas, defined as the constant presence or usual prevalence of a disease within a given geographic area or population. Results Sixteen studies met the inclusion criteria: seven qualitative (44%), three quantitative (19%) and six mixed-methods (37%). Studies assessed financial toxicity related to leprosy, defined as direct and indirect costs, out-of-pocket expenditure, income reduction and broader socioeconomic impacts using questionnaires, economic scales and qualitative analyses. Evidence consistently showed that people affected by leprosy face significant financial hardship, including out-of-pocket expenses, transport costs, work absenteeism and reduced earning capacity and barriers to accessing specialised services. Social stigma, physical disability and barriers to specialised services further increased economic vulnerability. Important knowledge gaps were identified regarding standardised measures of financial toxicity, health-system responses and social protection strategies in endemic settings. Conclusion Financial toxicity is a significant but underrecognised consequence of leprosy, extending beyond medical costs to lasting socioeconomic and psychosocial impacts. Integrating economic monitoring and social protection into leprosy control programmes may reduce financial vulnerability in endemic settings.

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Journal
Leprosy Review
Published
2026-11-11
DOI
https://doi.org/10.47276/lr.97.4.2026024
Primary Topic
Leprosy Research and Treatment
Type
article
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0.00
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article

Financial toxicity of patients affected by leprosy: a scoping review

Luciana de Alcântara Nogueira, Paula Sacha Frota Nogueira, GEORGE LUCAS FEITOSA ROLIM DE PAULA, Anna Luísa de Oliveira Parnaíba et al.
Leprosy Review
Leprosy Research and Treatment
article

Financial toxicity of patients affected by leprosy: a scoping review

Luciana de Alcântara Nogueira, Paula Sacha Frota Nogueira, GEORGE LUCAS FEITOSA ROLIM DE PAULA, Anna Luísa de Oliveira Parnaíba, Beatriz Amorim Beltrão, Francisca Semirames de Sousa Silvestre, Bianca da Silva Barbosa, Melissa Machado Cavalcante, Aurélio Vasconcelos Martins
article en

Abstract

Objectives To map and synthesise the available evidence on financial toxicity among individuals affected by leprosy and to identify knowledge gaps relevant to health systems and social protection policies in endemic settings. Methods A scoping review following the Joanna Briggs Institute methodology and PRISMA-ScR guidelines was conducted (OSF: https://osf.io/pzf45). Searches were performed between March and April 2025 in seven databases (PubMed, Scopus, Embase, Cochrane, Web of Science, BDENF and LILACS) and grey literature sources (Science.gov, CAPES, Google Scholar, WorldCat and the National Portal of Electronic Theses and Dissertations). Eligible studies were original research published between 2015 and 2025 addressing economic burden, out-of-pocket expenditure, catastrophic health expenditure, income loss or other indicators of financial hardship, such as employment instability, productivity loss, food insecurity, housing vulnerability, indebtedness, and barriers to education, among people affected by leprosy. No restrictions were applied regarding study design or geographic setting. However, the studies included in the review were conducted in the following countries: Brazil, Ethiopia, India, Indonesia, Liberia, Mozambique, Nepal, and Uganda. Two reviewers independently screened and extracted data, which were synthesised descriptively to identify the main dimensions of financial toxicity and relevant knowledge gaps for health systems and social protection policies in endemic areas, defined as the constant presence or usual prevalence of a disease within a given geographic area or population. Results Sixteen studies met the inclusion criteria: seven qualitative (44%), three quantitative (19%) and six mixed-methods (37%). Studies assessed financial toxicity related to leprosy, defined as direct and indirect costs, out-of-pocket expenditure, income reduction and broader socioeconomic impacts using questionnaires, economic scales and qualitative analyses. Evidence consistently showed that people affected by leprosy face significant financial hardship, including out-of-pocket expenses, transport costs, work absenteeism and reduced earning capacity and barriers to accessing specialised services. Social stigma, physical disability and barriers to specialised services further increased economic vulnerability. Important knowledge gaps were identified regarding standardised measures of financial toxicity, health-system responses and social protection strategies in endemic settings. Conclusion Financial toxicity is a significant but underrecognised consequence of leprosy, extending beyond medical costs to lasting socioeconomic and psychosocial impacts. Integrating economic monitoring and social protection into leprosy control programmes may reduce financial vulnerability in endemic settings.

Leprosy ReviewVol. 97(4)
Universidade Federal do Ceará (BR), Universidade Federal do Paraná (BR)
Leprosy Research and Treatment
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