Que no tengan miedo de nosotros:el Chagas según los propios protagonistas

Sanmartino, Mariana; Saavedra, Andrea Avaria; Prat, Jordi; Barba, Ma. Cristina Parada; Albajar-Viñas, Pedro

doi:10.1590/1807-57622014.1170

Cited by 26 publications

(31 citation statements)

References 9 publications

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“…"The patient with Chagas seeks something more than a tablet." -Nilce Mendoza, an individual affected by CD residing in Spain [140] Diagnosis of CD produces a range of reactions in individuals, from scepticism to fear and anxiety [141,142]. Those affected may feel understandable doubts about their diagnosis, given the lack of noticeable symptoms, and may not remember having been exposed to triatomines or other risk factors.…”

Section: Psychological Aspects In Comprehensive Care Of CDmentioning

confidence: 99%

WHF IASC Roadmap on Chagas Disease

Echeverría

Marcus

Novick

et al. 2020

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Background: Chagas Disease is a neglected tropical disease caused by the protozoan Trypanosoma cruzi, with some of the most serious manifestations affecting the cardiovascular system. It is a chronic, stigmatizing condition, closely associated with poverty and affecting close to 6 million people globally. Although historically the disease was limited to endemic areas of Latin America recent years have seen an increasing global spread. In addition to the morbidity and mortality associated with the disease, the social and economic burdens on individuals and society are substantial. Often called the 'silent killer', Chagas disease is characterized by a long, asymptomatic phase in affected indivi duals. A pproximately 30% then go on develop chronic Chagas cardiomyopathy and other serious cardiac complications such as stroke, rhythm disturbances and severe heart failure. Methods: In a collaboration of the World Hearth Federation (WHF) and the Inter-American S ociety of Cardiology (IASC) a writing group consisting of 20 diverse experts on Chagas disease (CD) was convened. The group provided up to date expert knowledge based on their area of expertise. An extensive review of the literature describing obstacles to diagnosis and treatment Echeverría et al: WHF IASC Roadmap on Chagas Disease Art. 26, page 2 of 31 of CD along with proposed solutions was conducted. A survey was sent to all WHF Members and, using snowball sampling to widen the consultation, to a variety of health care professionals working in the CD global health community. The results were analyzed, open comments were reviewed and consolidated, and the findings were incorporated into this document, thus ensuring a consensus representation. Results: The WHF IASC Roadmap on Chagas Disease offers a comprehensive summary of current knowledge on prevention, diagnosis and management of the disease. In providing an analysis of 'roadblocks' in access to comprehensive care for Chagas disease patients, the document serves as a framework from which strategies for implementation such as national plans can be formulated. Several dimensions are considered in the analysis: healthcare system capabilities, governance, financing, community awareness and advocacy. Conclusion: The WHF IASC Roadmap proposes strategies and evidence-based solutions for healthcare professionals, health authorities and governments to help overcome the barriers to comprehensive care for Chagas disease patients. This roadmap describes an ideal patient care pathway, and explores the roadblocks along the way, offering potential solutions based on available research and examples in practice. It represents a call to action to decision-makers and health care professionals to step up efforts to eradicate Chagas disease.

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Section: Psychological Aspects In Comprehensive Care Of CDmentioning

confidence: 99%

WHF IASC Roadmap on Chagas Disease

Echeverría

Marcus

Novick

et al. 2020

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“…Neglected tropical diseases are highly stigmatized in many settings and cultural contexts [99]. Studies in Latin America highlight stigmatization of people with CD, particularly in urban areas, because of the disease’s association with rurality and poverty [100–102]. CD diagnosis has even impacted patients’ employment in some settings [42, 103, 104].…”

Section: Psychosocial Barriersmentioning

confidence: 99%

“…Stigmatization and understandable fears of a life-threatening disease create a considerable emotional burden for people diagnosed with CD [100, 107]. US patients describe feelings of isolation, anguish, and abandonment because of their diagnosis [69, 108].…”

Section: Psychosocial Barriersmentioning

confidence: 99%

Proposed multidimensional framework for understanding Chagas disease healthcare barriers in the United States

Forsyth

Meymandi

Moss³

et al. 2019

PLoS Negl Trop Dis

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BackgroundChagas disease (CD) affects over 300,000 people in the United States, but fewer than 1% have been diagnosed and less than 0.3% have received etiological treatment. This is a significant public health concern because untreated CD can produce fatal complications. What factors prevent people with CD from accessing diagnosis and treatment in a nation with one of the world’s most advanced healthcare systems?Methodology/Principal findingsThis analysis of barriers to diagnosis and treatment of CD in the US reflects the opinions of the authors more than a comprehensive discussion of all the available evidence. To enrich our description of barriers, we have conducted an exploratory literature review and cited the experience of the main US clinic providing treatment for CD. We list 34 barriers, which we group into four overlapping dimensions: systemic, comprising gaps in the public health system; structural, originating from political and economic inequalities; clinical, including toxicity of medications and diagnostic challenges; and psychosocial, encompassing fears and stigma.ConclusionsWe propose this multidimensional framework both to explain the persistently low numbers of people with CD who are tested and treated and as a potential basis for organizing a public health response, but we encourage others to improve on our approach or develop alternative frameworks. We further argue that expanding access to diagnosis and treatment of CD in the US means asserting the rights of vulnerable populations to obtain timely, quality healthcare.

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“…Despite this progress, the number of CD patients receiving treatment remains low (45). This deficiency stems from various interrelated barriers, including the low priority given to CD by public health systems; the political marginalization and economic insecurity of the affected population (9, 11); low awareness among laypeople and physicians (13, 46, 47); diagnostic challenges (48); stigmatization and fear surrounding CD (12, 49); the lack of a test of cure (8); and the absence of treatment options in or near patients’ communities (10, 13). These barriers inhibit the demand for diagnostic and therapeutic products; in turn, low demand does not sustain production levels necessary for reaching millions of untreated individuals with CD.…”

Section: Dndi and Access To Chagas Disease Treatmentmentioning

confidence: 99%

A four-step process for building sustainable access to diagnosis and treatment of Chagas disease

Batista

Forsyth

Herazo

et al. 2019

Revista Panamericana De Salud Pública

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The vast majority of people with Chagas disease (CD) are undiagnosed and untreated. Improving access to diagnosis and treatment for CD involves confronting a wide range of barriers. This report discusses a collaborative approach to eliminate barriers and increase the availability of CD testing and treatment. Potential areas for intervention are selected based on burden of disease, support of local champions, and commitment from national and local authorities. A 4D approach (diagnose, design, deliver, and demonstrate impact) is then implemented. The diagnose step involves gathering key stakeholders at a seminar to collaboratively identify important barriers and propose solutions. The design step creates a specific plan to act upon the seminar’s conclusions with consensus on core indicators. The deliver step entails implementing the plan at pilot locations, while simultaneously strengthening health system capacity for CD testing and treatment. Lastly, the demonstrate impact step compares baseline data with annual post-implementation data to measure progress. In Colombia, this approach has helped simplify testing procedures and increase CD testing and treatment access in pilot communities, though challenges remain. The 4D approach represents one of several pathways toward ensuring that the best therapeutic and diagnostic products reach people affected by neglected tropical diseases.

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Que no tengan miedo de nosotros:el Chagas según los propios protagonistas

Cited by 26 publications

References 9 publications

WHF IASC Roadmap on Chagas Disease

WHF IASC Roadmap on Chagas Disease

Proposed multidimensional framework for understanding Chagas disease healthcare barriers in the United States

A four-step process for building sustainable access to diagnosis and treatment of Chagas disease

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