Global excellence in rheumatology in Latin America: The case of systemic lupus erythematosus

Ugarte‐Gil, Manuel F.; Fuentes-Silva, Yurilís; Pimentel-Quiroz, Víctor R.; Pons‐Estel, Guillermo J.; Quintana, Rosana; Pons-Éstel, Bernardo A; Alarcón, Graciela S.

doi:10.3389/fmed.2022.988191

Cited by 2 publications

(1 citation statement)

References 77 publications

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“…To improve access to therapies in LMICs, several actions are needed; for example, to improve early diagnosis, rheumatologists could work in networks, utilizing telehealth, and improve SLE knowledge among general practitioners [ 23 ]. Furthermore, rheumatologists can improve health literacy, utilizing social media to deliver information for SLE patients [ 24 ].…”

Section: Challenges In Lmicsmentioning

confidence: 99%

Challenges and opportunities in access to care for systemic lupus erythematosus patients across Europe and worldwide

Mosca,

Bruce,

Andersen

et al. 2024

Rheumatology

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SLE presents significant challenges for patients and health-care professionals (HCPs), both across Europe and worldwide. Improving health-care outcomes for patients with SLE requires a comprehensive understanding of patient disease pathways. In particular, the geographical distance between SLE patients and specialized care centres, combined with the scarcity of rheumatologists, exacerbates delays in diagnosis and management. Also, the initial SLE symptoms can often be non-specific, and providing guidelines for primary HCPs and other non-specialists is extremely important. Improvement in access to treatment is also important, with several recently approved therapies for SLE not being available in several European countries and many low- and middle-income countries (LMICs). Furthermore, in the LMICs in which these treatments are available, they are not always covered by the health-care system, making their access almost impossible for those of lower socio-economic status. A number of provisions are already in place within the European Union, to improve access to care for patients with rare and complex diseases, including those with SLE. In particular, European Reference Networks (ERNs), such the ERN for Autoimmune Diseases ReCONNET, are virtual networks involving HCPs across Europe with the aim of improving the care of patients with rare and complex diseases that require highly specialized treatment and a concentration of knowledge and resources. In addition, lupus patient organizations such as Lupus Europe play a crucial role in raising awareness of SLE and advocating for improved access to care. Together, we can work towards a future where all people living with lupus receive the comprehensive and timely care they deserve.

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Section: Challenges In Lmicsmentioning

confidence: 99%

Challenges and opportunities in access to care for systemic lupus erythematosus patients across Europe and worldwide

Mosca,

Bruce,

Andersen

et al. 2024

Rheumatology

View full text Add to dashboard Cite

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Addressing Health Illiteracy and Stunting in Culture-Shocked Indigenous Populations: A Case Study of Outer Baduy in Indonesia

Putri,

Agustin,

Bakti

et al. 2024

IJERPH

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This research aims to determine the factors, impacts, and solutions for health literacy in the Outer Baduy hamlets of Kanekes Village, Indonesia. The method used in this research is qualitative, which produces an in-depth explanation of the existing problems. Data were collected through interviews and documentation. Interviews were conducted with key figures, including two female Baduy residents with stunted children, one retainer, the head of the NGO SRI, a midwife who works in the Baduy village, and the head of the Lebak social service. Apart from that, secondary data in the form of recordings of community service talk shows conducted by the University of Indonesia to overcome stunting in Baduy were also analysed. The results show that the factors associated with the low health literacy of the Baduy community are literacy, writing and reading, taboos on eating certain foods, people spending too much time in the fields, people learning by imitating their parents, demanding access to villages, lack of consistency from external parties in providing health programs, and gender segregation in Baduy society. The impact of the low health literacy of the Baduy community is fatalism, high maternal and child mortality rates, and high health costs. The proposed strategies for increasing the health literacy of the Baduy community based on the findings of this research include developing health literacy by targeting community leaders, managing information-technology-based health-information groups, and always presenting at least one health worker among the residents who provides an example of healthy living, encouraging collective reflection. when health cases occur, and balancing gender communication.

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Global excellence in rheumatology in Latin America: The case of systemic lupus erythematosus

Cited by 2 publications

References 77 publications

Challenges and opportunities in access to care for systemic lupus erythematosus patients across Europe and worldwide

Challenges and opportunities in access to care for systemic lupus erythematosus patients across Europe and worldwide

Addressing Health Illiteracy and Stunting in Culture-Shocked Indigenous Populations: A Case Study of Outer Baduy in Indonesia

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