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Epidemiology (Cambridge, Mass.) May 2023US racial-ethnic mortality disparities are well documented and central to debates on social inequalities in health. Standard measures, such as life expectancy or years...
BACKGROUND
US racial-ethnic mortality disparities are well documented and central to debates on social inequalities in health. Standard measures, such as life expectancy or years of life lost, are based on synthetic populations and do not account for the real underlying populations experiencing the inequalities.
METHODS
We analyze US mortality disparities comparing Asian Americans, Blacks, Hispanics, and Native Americans/Alaska Natives to Whites using 2019 CDC and NCHS data, using a novel approach that estimates the mortality gap, adjusted for population structure by accounting for real-population exposures. This measure is tailored for analyses where age structures are fundamental, not merely a confounder. We highlight the magnitude of inequalities by comparing the population structure-adjusted mortality gap against standard metrics' estimates of loss of life due to leading causes.
RESULTS
Based on the population structure-adjusted mortality gap, Black and Native American mortality disadvantage exceedsmortality from circulatory diseases. The disadvantage is 72% among Blacks (men: 47%, women: 98%) and 65% among Native Americans (men: 45%, women: 92%), larger than life expectancy measured disadvantage. In contrast, estimated advantages for Asian Americans are over three times (men: 176%, women: 283%) and, for Hispanics, two times (men: 123%; women: 190%) larger than those based on life expectancy.
CONCLUSIONS
Mortality inequalities based on standard metrics' synthetic populations can differ markedly from estimates of the population structure-adjusted mortality gap. We demonstrate that standard metrics underestimate racial-ethnic disparities through disregarding actual population age structures. Exposure-corrected measures of inequality may better inform health policies around allocation of scarce resources.
Topics: Female; Humans; Male; American Indian or Alaska Native; Health Status Disparities; Hispanic or Latino; Life Expectancy; Racial Groups; United States; White; Black or African American; Mortality
PubMed: 36863061
DOI: 10.1097/EDE.0000000000001595 -
PLoS Neglected Tropical Diseases Sep 2021Scabies has recently gained international attention, with the World Health Organization (WHO) recognizing it as a neglected tropical disease. The International Alliance... (Review)
Review
Scabies has recently gained international attention, with the World Health Organization (WHO) recognizing it as a neglected tropical disease. The International Alliance for the Control of Scabies recently formed as a partnership of more than 15 different countries, with an aim to lead a consistent and collaborative approach to preventing and controlling scabies globally. Scabies is most prevalent in low-resource and low socioeconomic areas that experience overcrowding and has a particularly high prevalence in children, with an estimated 5% to 10% in endemic countries. Scabies is widespread in remote Aboriginal and Torres Strait Islander communities in Australia with the prevalence of scabies in Aboriginal and Torres Strait Islander children in remote communities estimated to be as high as 33%, making it the region with the third highest prevalence in the world. This population group also have very high rates of secondary complications of scabies such as impetigo, poststreptococcal glomerulonephritis (PSGN), and rheumatic heart disease (RHD). This article is a narrative review of scabies in remote Aboriginal and Torres Strait Islander populations in Australia, including clinical manifestations of disease and current treatment options and guidelines. We discuss traditional approaches to prevention and control as well as suggestions for future interventions including revising Australian treatment guidelines to widen the use of oral ivermectin in high-risk groups or as a first-line treatment.
Topics: Antiparasitic Agents; Australia; Demography; Humans; Ivermectin; Native Hawaiian or Other Pacific Islander; Scabies
PubMed: 34591843
DOI: 10.1371/journal.pntd.0009751 -
Translational Behavioral Medicine Jul 2022South Asians are among the fastest growing ethnic group in the USA yet remain understudied in epidemiologic studies. Due to their unique disease profile, identifying...
South Asians are among the fastest growing ethnic group in the USA yet remain understudied in epidemiologic studies. Due to their unique disease profile, identifying risk moderators and mitigators, such as dietary patterns and food intake, will help to determine the diet-disease relationship that is specific to this largely immigrant population group in the USA. The aim of this commentary is to highlight the dietary traditions and acculturated practices experienced by South Asians in the USA with a call for a diet assessment instrument that adequately captures their dietary diversity. Specifically, we call for (i) the inclusion of traditional food items, such as herbs and spices, that individualize diet assessment for participants; and (ii) leveraging technology that will enhance the experience of diet assessment for both researchers and participants, tailoring the collection of habitual dietary intake in this diverse population group.
Topics: Humans; Diet; Asian People; Eating; Ethnicity; Risk Factors; Technology
PubMed: 35674338
DOI: 10.1093/tbm/ibac020 -
Rural and Remote Health Jul 2023Improving the oral health of Aboriginal and Torres Strait Islander people has been prioritised by both of the Australian National Oral Health Plans (2004-2013 and...
CONTEXT
Improving the oral health of Aboriginal and Torres Strait Islander people has been prioritised by both of the Australian National Oral Health Plans (2004-2013 and 2015-2024). However, providing adequate access to timely dental care to remote Aboriginal communities remains a challenge. The Kimberley region of Western Australia in particular experiences a significantly higher prevalence of dental disease compared to other regional centres. The region covers an area of over 400 000 km2, with 97% of this being classified as very remote and 42% of the population identifying as Aboriginal and/or Torres Strait Islander. The provision of dental care to remote Aboriginal communities in the Kimberley is complex and involves careful consideration of the unique environmental, cultural, organisational and clinical factors at play.
ISSUE
The low population densities combined with the high running costs of a fixed dental practice mean that establishing a permanent dental workforce is generally not viable in remote communities in the Kimberley. Thus there is a pressing need to explore alternative strategies to extend care to these communities. In this context, the Kimberley Dental Team (KDT), a non-government, volunteer-led organisation, was established to 'fill the gaps' and extend dental care to areas of unmet need. There is currently a lack of literature around the structure, logistics and delivery of volunteer dental services to remote communities. This paper describes the KDT, its development, resources, operational factors and organisational characteristics of the model of care, including mapping the reach of the program.
LESSONS LEARNED
This article underlines the challenges around dental service provision to remote Aboriginal communities and the evolution of a volunteer service model over the course of a decade. The structural components integral to the KDT model were identified and described. Community-based oral health promotion through initiatives such as supervised school toothbrushing programs enabled access to primary prevention for all school children. This was combined with school-based screening and triage to identify children in need of urgent care. Collaboration with community-controlled health services and cooperative use of infrastructure enabled holistic management of patients, continuity of care and increased efficiency of existing equipment. Integration with university curricula and supervised outreach placements were used to support training of dental students and attract new graduates into remote area dental practice. Supporting volunteer travel and accommodation and creating a sense of family were central to volunteer recruitment and sustained engagement. Service delivery approaches were adapted to meet community needs; a multifaceted hub-and-spoke model with mobile dental units was used to increase the reach of services. Strategic leadership through an overarching governance framework built from community consultation and steered by an external reference committee informed the model of care and its future direction.
Topics: Child; Humans; Australia; Australian Aboriginal and Torres Strait Islander Peoples; Health Services, Indigenous; Population Groups; Volunteers; Western Australia; Dental Care
PubMed: 37410938
DOI: 10.22605/RRH7366 -
Health & Social Care in the Community Nov 2022Understanding the experiences and perspectives of users of teletherapy living with a disability and working with them, offers the potential to improve its capacity to... (Review)
Review
Understanding the experiences and perspectives of users of teletherapy living with a disability and working with them, offers the potential to improve its capacity to meet their requirements. Literature examining the effectiveness of interventions delivered via teletherapy often fail to explore the motivators and implementation needs of the users. The scoping review aimed to examine the research evidence addressing user perspectives of teletherapy in delivery of allied health interventions to the disability community. The Joanna Briggs scoping review protocol methodology was employed with searches completed across five databases (ProQuest, CINAHL (EBSCO), Medline (OVID), Scopus, Google Scholar) in September 2021. The search yielded a total of 1365 results, 147 progressed to full text screening and 22 articles included in thematic analysis. Findings were split into themes addressing organisational and implementation based considerations for teletherapy, and secondly the social and contextual considerations of the Target Participants. The two areas of interest were addressed under each theme some of which include resourcing and upskilling, financial, challenging the status quo, moving from hands on to coaching and the utilisation of a hybrid model of intervention delivery. Teletherapy is viewed as creating a distinct set of benefits and challenges compared to in person service delivery, which impact individual members of the disability community differently. The scoping review identifies a strong need from recipients to trial teletherapy and experience it personally to facilitate understanding of how it can best suit an individual. More than being viewed as an alternative to in person services, teletherapy is viewed by users as better suited as a complementary service with flexibility of hybrid model opportunities valued above exclusive use of one over the other.
Topics: Humans; Community Health Services; Disabled Persons; Population Groups
PubMed: 36373233
DOI: 10.1111/hsc.14105 -
The Gerontologist Apr 2021In the next few decades, the number of Mexican American older adults with Alzheimer's disease and related disorders will increase dramatically. Given that this...
BACKGROUND AND OBJECTIVES
In the next few decades, the number of Mexican American older adults with Alzheimer's disease and related disorders will increase dramatically. Given that this population underutilizes formal care services, the degree of care responsibilities in Mexican American families is likely to increase at the same time. However, little is known about the changing need for assistance with instrumental day-to-day activities and emotional support by long-term patterns of cognitive impairment.
RESEARCH DESIGN AND METHODS
We use 7 waves of the Hispanic Established Populations for the Epidemiologic Studies of the Elderly (1992/1993-2010/2011) and trajectory modeling to describe long-term patterns of perceived emotional and instrumental support, and dementia.
RESULTS
Results revealed 2 latent classes of both emotional and instrumental support trajectories: low and high support. Specifically, those living alone were more likely to belong to the group with low support than to that with high support. Three latent classes for likely dementia were also revealed: likely dementia, increasing impairment, and no impairment. Those living alone were more likely to belong to the increasing impairment and likely dementia groups. The dual trajectory of emotional and instrumental support with likely dementia revealed that the probability of belonging to the low-support group was highest for those with increasing impairment.
DISCUSSION AND IMPLICATIONS
These findings highlight the risk and vulnerability of those who live alone concerning perceived social support and dementia. Implications of the findings for the potential dependency burden on Latino caregivers are discussed.
Topics: Aged; Caregivers; Dementia; Hispanic or Latino; Humans; Mexican Americans; Social Support
PubMed: 32756950
DOI: 10.1093/geront/gnaa100 -
Orphanet Journal of Rare Diseases Jan 2022Experienced fatigue is an under-recognized and under-researched feature in persons with many different rare diseases. A better overview of the characteristics of... (Review)
Review
BACKGROUND
Experienced fatigue is an under-recognized and under-researched feature in persons with many different rare diseases. A better overview of the characteristics of existing research on experienced fatigue in children and adults with rare diseases is needed. The purpose of this review was to map and describe characteristics of existing research on experienced fatigue in a selection of rare diseases in rare developmental defects or anomalies during embryogenesis and rare genetic diseases. Furthermore, to identify research gaps and point to research agendas.
METHODS
We applied a scoping review methodology, and performed a systematic search in March 2020 in bibliographic databases. References were sorted and evaluated for inclusion using EndNote and Rayyan. Data were extracted on the main research questions concerning characteristics of research on experienced fatigue (definition and focus on fatigue, study populations, research questions investigated and methods used).
RESULTS
This review included 215 articles on ten different rare developmental defects/anomalies during embryogenesis and 35 rare genetic diseases. Of the 215 articles, 82 had investigation of experienced fatigue as primary aim or outcome. Included were 9 secondary research articles (reviews) and 206 primary research articles. A minority of articles included children. There were large differences in the number of studies in different diseases. Only 29 of 215 articles gave a description of how they defined the concept of experienced fatigue. The most common research-question reported on was prevalence and/ -or associations to fatigue. The least common was diagnostics (development or validation of fatigue assessment methods for a specific patient group). A large variety of methods were used to investigate experienced fatigue, impeding comparisons both within and across diagnoses.
CONCLUSION
This scoping review on the characteristics of fatigue research in rare diseases found a large variety of research on experienced fatigue. However, the minority of studies had investigation of experienced fatigue as a primary aim. There was large variation in how experienced fatigue was defined and also in how it was measured, both within and across diagnoses. More research on experienced fatigue is needed, both in children and adults with rare diseases. This review offers a basis for further research.
Topics: Adult; Child; Fatigue; Humans; Population Groups; Rare Diseases
PubMed: 35012596
DOI: 10.1186/s13023-021-02169-6 -
Annual Review of Genomics and Human... Aug 2021Genomic information is poised to play an increasing role in clinical care, extending beyond highly penetrant genetic conditions to less penetrant genotypes and common...
Genomic information is poised to play an increasing role in clinical care, extending beyond highly penetrant genetic conditions to less penetrant genotypes and common disorders. But with this shift, the question of clinical utility becomes a major challenge. A collaborative effort is necessary to determine the information needed to evaluate different uses of genomic information and then acquire that information. Another challenge must also be addressed if that process is to provide equitable benefits: the lack of diversity of genomic data. Current genomic knowledge comes primarily from populations of European descent, which poses the risk that most of the human population will be shortchanged when health benefits of genomics emerge. These two challenges have defined my career as a geneticist and have taught me that solutions must start with dialogue across disciplinary and social divides.
Topics: Genomics; Humans; Population Groups; Precision Medicine
PubMed: 33792358
DOI: 10.1146/annurev-genom-120220-082640 -
International Journal of Environmental... Mar 2021(1) Background: This systematic review was conducted to identify cancer patient experiences, and the impact of out-of-pocket costs and financial burden in Australia. (2)... (Review)
Review
(1) Background: This systematic review was conducted to identify cancer patient experiences, and the impact of out-of-pocket costs and financial burden in Australia. (2) Methods: A systematic review, following the Preferring Reporting Items for Systematic Reviews and Meta-Analyses, was conducted. Cumulative Index of Nursing and Allied Health Literature and PubMed were searched. The primary outcome was financial burden among cancer patients and their families in Australia. The secondary outcome was out-of-pocket costs associated with cancer care and treatment within the population sample, and the impact of financial burden. (3) Results: Nineteen studies were included, covering more than 70,000 Australians affected by cancer. Out-of-pocket costs varied by cancer type and ranged from an average of AUD 977 for breast cancer and lymphoedema patients to AUD 11,077 for prostate cancer patients. Younger aged patients (≤65 years), Aboriginal and Torres Strait Islander people, people in rural and/or remote areas, households with low income, those who were unemployed and people with private health insurance were at increased risk of experiencing out-of-pocket costs, financial burden or a combination of both. (4) Conclusions: Australians diagnosed with cancer frequently experience financial burden, and the health and financial consequences are significant. Focusing efforts on the costs of care and options about where to have care within the context of informed decisions about cancer care is necessary.
Topics: Aged; Australia; Health Expenditures; Humans; Male; Native Hawaiian or Other Pacific Islander; Neoplasms; Population Groups; Rural Population
PubMed: 33801282
DOI: 10.3390/ijerph18052422 -
International Journal of Epidemiology Feb 2022Methods for calculating health indicators profoundly influence understanding of and action on population health and inequities. Age-standardization can be useful and is...
Methods for calculating health indicators profoundly influence understanding of and action on population health and inequities. Age-standardization can be useful and is commonly applied to account for differences in age structures when comparing health indicators across groups. Age-standardized rates have well-acknowledged limitations, including that they are relative indices for comparison, and not accurate measures of actual rates where the age structures of groups diverge. This paper explores these limitations, and demonstrates alternative approaches through a case study quantifying mortality rates within the Aboriginal and Torres Strait Islander (Indigenous) population of Australia and inequities compared with the non-Indigenous population, over 2001-16. Applying the Australian Standard Population, the Aboriginal and Torres Strait Islander age-standardized mortality rate was more than double the crude mortality rate in 2001 and 2016, inflated through high weighting of older age groups. Despite divergent population age structures, age-standardized mortality rates remain a key policy metric for measuring progress in reducing Indigenous-non-Indigenous inequities in Australia. Focusing on outcomes age-standardized to the total population can obscure inequities, and denies Aboriginal and Torres Strait Islander peoples and communities valid, actionable information about their health and well-being. Age-specific statistics convey the true magnitude of health risks and highlight high-risk subgroups. When requiring standardization, standardizing to a population-specific standard (here, an Indigenous standard) generates metrics centred around and reflective of reality for the population of focus, supporting communities' self-determination to identify priorities and informing resource allocation and service delivery. The principles outlined here apply across populations, including Indigenous and other populations internationally.
Topics: Aged; Australia; Humans; Native Hawaiian or Other Pacific Islander; Policy; Population Groups
PubMed: 34223891
DOI: 10.1093/ije/dyab132