Costs Related to Frontotemporal Dementia in Latin America: A Scoping Review of Economic Health Studies.
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ABSTRACT:
SUBMITTER: Alva-Diaz C
PROVIDER: S-EPMC8419437 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Frontotemporal dementia (FTD) includes a group of clinically, genetically, and pathologically heterogeneous neurodegenerative disorders, affecting the fronto-insular-temporal regions of the brain. Clinically, FTD is characterized by progressive deficits in behavior, executive function, and language and its diagnosis relies mainly on the clinical expertise of the physician/consensus group and the use of neuropsychological tests and/or structural/functional neuroimaging, depending on local availability. The modest correlation between clinical findings and FTD neuropathology makes the diagnosis difficult using clinical criteria and often leads to underdiagnosis or misdiagnosis, primarily due to lack of recognition or awareness of FTD as a disease and symptom overlap with psychiatric disorders. Despite advances in understanding the underlying neuropathology of FTD, accurate and sensitive diagnosis for this disease is still lacking. One of the major challenges is to improve diagnosis in FTD patients as early as possible. In this context, biomarkers have emerged as useful methods to provide and/or complement clinical diagnosis for this complex syndrome, although more evidence is needed to incorporate most of them into clinical practice. However, most biomarker studies have been performed using North American or European populations, with little representation of the Latin American and the Caribbean (LAC) region. In the LAC region, there are additional challenges, particularly the lack of awareness and knowledge about FTD, even in specialists. Also, LAC genetic heritage and cultures are complex, and both likely influence clinical presentations and may modify baseline biomarker levels. Even more, due to diagnostic delay, the clinical presentation might be further complicated by both neurological and psychiatric comorbidity, such as vascular brain damage, substance abuse, mood disorders, among others. This systematic review provides a brief update and an overview of the current knowledge on genetic, neuroimaging, and fluid biomarkers for FTD in LAC countries. Our review highlights the need for extensive research on biomarkers in FTD in LAC to contribute to a more comprehensive understanding of the disease and its associated biomarkers. Dementia research is certainly reduced in the LAC region, highlighting an urgent need for harmonized, innovative, and cross-regional studies with a global perspective across multiple areas of dementia knowledge.
| S-EPMC8263937 | biostudies-literature
Project description:Beyond canonical deficits in social cognition and interpersonal conduct, behavioral variant frontotemporal dementia (bvFTD) involves language difficulties in a substantial proportion of cases. However, since most evidence comes from high-income countries, the scope and relevance of language deficits in Latin American bvFTD samples remain poorly understood. As a first step toward reversing this scenario, we review studies reporting language measures in Latin American bvFTD cohorts relative to other groups. We identified 24 papers meeting systematic criteria, mainly targeting phonemic and semantic fluency, naming, semantic processing, and comprehension skills. The evidence shows widespread impairments in these domains, often related to overall cognitive disturbances. Some of these deficits may be as severe as in other diseases where they are more widely acknowledged, such as Alzheimer's disease. Considering the prevalence and informativeness of language deficits in bvFTD patients from other world regions, the need arises for more systematic research in Latin America, ideally spanning multiple domains, in diverse languages and dialects, with validated batteries. We outline key challenges and pathways of progress in this direction, laying the ground for a new regional research agenda on the disorder.
| S-EPMC8383282 | biostudies-literature
Project description:Artificial intelligence (AI) algorithms have the potential to revolutionize healthcare, but their successful translation into clinical practice has been limited. One crucial factor is the data used to train these algorithms, which must be representative of the population. However, most healthcare databases are derived from high-income countries, leading to non-representative models and potentially exacerbating health inequities. This review focuses on the landscape of health-related open datasets in Latin America, aiming to identify existing datasets, examine data-sharing frameworks, techniques, platforms, and formats, and identify best practices in Latin America. The review found 61 datasets from 23 countries, with the DATASUS dataset from Brazil contributing to the majority of articles. The analysis revealed a dearth of datasets created by the authors themselves, indicating a reliance on existing open datasets. The findings underscore the importance of promoting open data in Latin America. We provide recommendations for enhancing data sharing in the region.
| S-EPMC10599518 | biostudies-literature
Project description:All health-related quality-of-life (HRQL) measures for dementia have been developed in high-income countries and none were validated for cross-cultural use. Yet, the global majority of people living with dementia reside in low- and middle-income countries. We therefore investigated the measurement invariance of a set of self- and informant-report HRQL measures developed in the United Kingdom when used in Latin America. Self-reported HRQL was obtained using (DEMQOL) at a memory assessment service in the United Kingdom (n = 868) and a population cohort study in Latin America (n = 417). Informant reports were collected using DEMQOL-Proxy at both sites (n = 909 and n = 495). Multiple-group confirmatory bifactor models for ordered categorical item responses were estimated to evaluate measurement invariance. Results support configural, metric, and scalar invariance for the concept of general HRQL in DEMQOL and DEMQOL-Proxy. The dominant impact of general HRQL on item responses was evident across U.K. English and Ibero American Spanish versions of DEMQOL (?h = 0.87-0.90) and DEMQOL-Proxy (?h = 0.88-0.89). Ratings of "positive emotion" did not show a major impact on general HRQL appraisal, particularly for Latin American respondents. Item information curves show that self- and informant-reports were highly informative about the presence rather than the absence of HRQL impairment. We found no major difference in conceptual meaning, sensitivity, and relevance of DEMQOL and DEMQOL-Proxy for older adults in the United Kingdom and Latin America. Further replication is needed for consensus over which HRQL measures are appropriate for making cross-national comparisons in global dementia research. (PsycINFO Database Record (c) 2019 APA, all rights reserved).
| S-EPMC6818683 | biostudies-literature
Project description:Alzheimer's disease (AD) and frontotemporal dementia (FTD) are neurodegenerative disorders that result in a significant burden to both patients and caregivers. By 2050, the number of people with dementia in Latin America will increase 4-fold. A deep understanding of the relevant genetic factors of AD and FTD is fundamental to tackle this reality through prevention. A review of different genetic variants that cause AD or FTD in Latin America was conducted. We searched Medline and PubMed databases using the keywords "Alzheimer's disease," "frontotemporal dementia," "mutation," "America," and "Latin America," besides specific Latin American countries. Forty-five items were chosen and analyzed. PSEN1 mutations are the commonest cause of genetic early-onset Alzheimer's disease (EOAD), followed by PSEN2 and APP mutations. Genetic FTD can be mainly explained by GRN and MAPT mutations, as well as C9orf72 G4C2 repeat expansion. APOE ε4 can modify the prevalence and incidence of late-onset Alzheimer's disease (LOAD), in addition to the cognitive performance in affected carriers.
| S-EPMC7500810 | biostudies-literature
Project description:Annual trivalent influenza vaccines (TIV) containing 2 A strains and one B lineage have been recommended for the prevention of influenza in most of Latin American countries. However, the circulation of 2 B lineages (Victoria and Yamagata) and difficulties in predicting the predominating lineage have led to the development of quadrivalent influenza vaccines (QIV), including both B lineages. Thus, the objective was to estimate the public health impact and influenza-related costs if QIV would have been used instead of TIV in 3 Latin American countries. We used a static model over the seasons 2010-2014 in Brazil, 2007-2014 in Colombia and 2006-2014 in Panama, focusing on population groups targeted by local vaccination recommendations: young children, adults with risk factors and the elderly. In Brazil, between 2010 and 2014, using QIV instead of TIV would have avoided US$ 6,200 per 100,000 person-years in societal costs, based on 168 influenza cases, 89 consultations, 3.2 hospitalizations and 0.38 deaths per 100,000 person-years. In Colombia and Panama, these would have ranged from US$ 1,000 to 12,700 (based on 34 cases, 13-25 consultations, 0.6-8.9 hospitalizations and 0.04-1.74 deaths) and from US$ 3,000 to 33,700 (based on 113 cases, 55-82 consultations, 0.5-27.8 hospitalizations and 0.08-6.87 deaths) per 100,000 person-years, respectively. Overall, the broader protection offered by QIV would have reduced the influenza humanistic and economic burden in the 3 countries. Despite the lack of local data leading to several extrapolations, this study is the first to give quantitative estimates of the potential benefits of QIV in Latin America.
| S-EPMC5404619 | biostudies-literature
Project description:Introduction: The historical development, frequency, and impact of frontotemporal dementia (FTD) are less clear in Latin America than in high-income countries. Although there is a growing number of dementia studies in Latin America, little is known collectively about FTD prevalence studies by country, clinical heterogeneity, risk factors, and genetics in Latin American countries. Methods: A systematic review was completed, aimed at identifying the frequency, clinical heterogeneity, and genetics studies of FTD in Latin American populations. The search strategies used a combination of standardized terms for FTD and related disorders. In addition, at least one author per Latin American country summarized the available literature. Collaborative or regional studies were reviewed during consensus meetings. Results: The first FTD reports published in Latin America were mostly case reports. The last two decades marked a substantial increase in the number of FTD research in Latin American countries. Brazil (165), Argentina (84), Colombia (26), and Chile (23) are the countries with the larger numbers of FTD published studies. Most of the research has focused on clinical and neuropsychological features (n = 247), including the local adaptation of neuropsychological and behavioral assessment batteries. However, there are little to no large studies on prevalence (n = 4), biomarkers (n = 9), or neuropathology (n = 3) of FTD. Conclusions: Future FTD studies will be required in Latin America, albeit with a greater emphasis on clinical diagnosis, genetics, biomarkers, and neuropathological studies. Regional and country-level efforts should seek better estimations of the prevalence, incidence, and economic impact of FTD syndromes.
| S-EPMC8450529 | biostudies-literature
Project description:OBJECTIVES:Despite research documenting significant health disparities among sexual minority women (lesbian, bisexual, and other non-heterosexual women) in high-income countries, few studies of sexual minority women's health have been conducted in low- and middle-income countries. The purpose of this scoping review was to examine the empirical literature related to the health disparities and health needs of sexual minority women in Latin America and the Caribbean (LAC), and to identify research gaps and priorities. DESIGN:A scoping review methodology was used. DATA SOURCES:We conducted a comprehensive search of seven electronic databases. The search strategy combined keywords in three areas: sexual minority women, health, and LAC. English, Spanish, and Portuguese language studies published through 2017 in peer-reviewed journals were included. REVIEW METHODS:A total 1471 articles were retrieved. An additional 5 articles were identified following descendancy search; 3 of these met inclusion criteria. After removal of duplicates and title and abstract screening, we screened the full text of 37 articles, of which 22 (representing 18 distinct studies) met inclusion criteria. At least two authors independently reviewed and abstracted data from all articles. RESULTS:More than half of the studies were conducted in Brazil (n?=?9) and Mexico (n?=?5). Sexual health was the most studied health issue (n?=?11). Sexual minority women were at elevated risk for sexually transmitted infections related to low use of barrier contraceptive methods during sexual encounters with men. Findings suggest that sexual minority women are generally distrustful of healthcare providers and view the healthcare system as heteronormative. Providers are believed to lack the knowledge and skills to provide culturally competent care to sexual minority women. Sexual minority women generally reported low levels of sexual health education and reluctance in seeking preventive screenings due to fear of mistreatment from healthcare providers. Sexual minority women also reported higher rates of poor mental health, disordered eating, and substance use (current tobacco and alcohol use) than heterosexual women. Gender-based violence was identified as a significant concern for sexual minority women in LAC. CONCLUSIONS:Significant knowledge gaps regarding sexual minority women's health in LAC were identified. Additional investigation of understudied areas where health disparities have been observed in other global regions is needed. Future research should explore how the unique social stressors sexual minority women experience impact their health. Nurses and other healthcare providers in the region need training in providing culturally appropriate care for this population.
| S-EPMC6570531 | biostudies-literature
Project description:ObjectiveTo estimate and compare the economic costs of mental health-related discrimination in the domains of health care, relationships and participation in leisure activities in England between 2011 and 2014.MethodA subsample of the Viewpoint survey was interviewed using the Costs of Discrimination Assessment Questionnaire in 2011 and 2014. Information on the impact of discrimination on healthcare use, help seeking from family and friends and participation in leisure activities was recorded. Pattern of contacts, costs and predictor of costs were examined.ResultsOur findings showed higher costs of health service use for individuals who reported experiences of discrimination in healthcare settings in 2011 compared with those who did not (mean difference £625, P-value 0.019). Individuals who reported experiences of discrimination in relationships in 2014 had higher healthcare costs than those who did not (mean difference £418, P -value 0.034). There was some evidence of a reduction in overall levels of healthcare use, leisure activities and support from families over time. Discrimination did not significantly affect help seeking from family/friends or leisure activities.ConclusionThere is some evidence that discrimination is related to increased healthcare costs. A prospective study is needed to better understand the consequences of these effects.
| S-EPMC6680195 | biostudies-literature
Project description:IntroductionThe dementia experience is not a monolithic phenomenon-and while core elements of dementia are considered universal-people living with dementia experience the disorder differently. Understanding the patterning of Alzheimer's disease and related dementias (ADRD) in the population with regards to incidence, risk factors, impacts on dementia care, and economic costs associated with ADRD can provide clues to target risk and protective factors for all populations as well as addressing health disparities.MethodsWe discuss information presented at the 2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers, Theme 1: Impact of Dementia. In this article, we describe select population trends, care interventions, and economic impacts, health disparities and implications for future research from the perspective of our diverse panel comprised of academic stakeholders, and persons living with dementia, and care partners.ResultsDementia incidence is decreasing yet the advances in population health are uneven. Studies examining the educational, geographic and race/ethnic distribution of ADRD have identified clear disparities. Disparities in health and healthcare may be amplified by significant gaps in the evidence base for pharmacological and non-pharmacological interventions. The economic costs for persons living with dementia and the value of family care partners' time are high, and may persist into future generations.ConclusionsSignificant research gaps remain. Ensuring that ADRD healthcare services and long-term care services and supports are accessible, affordable, and effective for all segments of our population is essential for health equity. Policy-level interventions are in short supply to redress broad unmet needs and systemic sources of disparities. Whole of society challenges demand research producing whole of society solutions. The urgency, complexity, and scale merit a "whole of government" approach involving collaboration across numerous federal agencies.
| S-EPMC8608182 | biostudies-literature