Communities In High-income Countries Research Articles

COVID-19 vaccine acceptance in the general population and under-resourced communities from high-income countries: realist review

ObjectiveTo compare vaccination willingness before rollout and 1 year post-rollout uptake among the general population and under-resourced communities in high-income countries.DesignA realist review.Data sourcesEmbase, PubMed, Dimensions ai and Google Scholar.SettingHigh-income...

"All you Gain is Pain and Sorrow": Facilitators and Barriers to the Prevention of Female Genital Mutilation in High-income Countries.

Female genital mutilation (FGM) is a harmful practice that has long-lasting negative impacts on the physical and psychological health of victims. Deemed a global concern, this practice persists in high-income countries (HIC) among certain migrant communities. Given the deleterious effects of the practice, we conducted an updated systematic review of the facilitators and barriers associated with the prevention of FGM in HIC. A systematic review of published qualitative studies of FGM in HIC was conducted from 2012 to 2022. The search resulted in 276 studies. Of these, the majority were from low- and middle-income countries (LMIC) and excluded. A total of 14 studies were deemed fit for inclusion and none were excluded during quality appraisal. Relevant data were extracted from the studies and thematically analyzed to identify prevalent themes. A total of 12 themes were identified and the majority reflected barriers to the prevention of FGM including beliefs about female virtue, beliefs about social sanctions, and the preservation of culture, among others. Facilitators to the prevention of FGM were fewer and included memory and trauma from experiencing FGM, knowledge and awareness of the female anatomy, and legislative protection from FGM due to migration. A few themes, such as religious beliefs, acted as both facilitators and barriers. Findings highlight the importance of shared cultural and social threads among FGM practicing communities in HIC. Interventions can use these findings to guide the development of sociocultural strategies centered on community-level prevention and reduction of FGM in HIC.

Understanding the influence of ethnicity on adherence to antidiabetic medication: Meta-ethnography and systematic review.

A high prevalence of diabetes and diabetes-related complications in people from minority ethnic communities in high income countries is of significant concern. Several studies have indicated low adherence rates to antidiabetic medication in ethnic minority groups. Poor adherence to antidiabetic medication leads to a higher risk of complications and potential mortality. This review aims to qualitatively explore the barriers to and facilitators of adherence to antidiabetic medication among ethnic minority groups in high-income countries. A comprehensive search of MEDLINE, Embase, CINAHL, PsycINFO, and Global Health databases for qualitative studies exploring the barriers to or facilitators of adherence to antidiabetic medication in minority ethnic groups was conducted from database inception to March 2023 (PROSPERO CRD42022320681). A quality assessment of the included studies was conducted using the Critical Appraisal Skills Programme (CASP) tool. Key concepts and themes from relevant studies were synthesised using a meta-ethnographic approach. The Grading of Recommendations Assessment, Development and Evaluation Confidence in the Evidence from Reviews of Qualitative research (GRADE-CERQual) approach was used to assess the Confidence in the review findings. Of 13,994 citations screened, 21 studies that included primary qualitative studies were selected, each of which involved people from minority ethnic communities from eight high income countries. This qualitative evidence synthesis has identified three overarching themes around the barriers to and facilitators of adherence to antidiabetic medication among ethnic minority groups.: 1) cultural underpinnings, 2) communication and building relationships, and 3) managing diabetes during visiting home countries. Based on the GRADE-CERQual assessment, we had mainly moderate- and high-confidence findings. Multiple barriers and facilitators of adherence to antidiabetic medication among people from minority ethnic communities in high-income countries have been identified. A medication adherence intervention focusing on identified barriers to adherence to antidiabetic medication in these communities may help in improving diabetes outcomes in these groups.

“Sometimes I just forget them”: capturing experiences of women about free menstrual products in a U.S. based public university campus

BackgroundStudies have proven that lack of access to menstruation products negatively affects school attendance, academic performance, and individual health. Implementing “period policies,” or programs offering free menstruation products, are becoming popular in schools, businesses, and communities in high-income countries. U.S.-based Purdue University announced in February 2020 that free pads and tampons would be stocked in all women’s and gender-neutral restrooms in campus buildings. This study aimed to capture the experiences of menstruators about free menstrual products and the impact of a university-wide free menstruation management product policy and program. A second purpose was to understand how access to menstrual management products is intertwined with broader socio-cultural experiences of a menstruator.MethodsAs part of a larger study, virtual focus group discussions (n = 32 across 5 focus groups) were conducted in February 2021. Eligible participants were student-menstruators attending Purdue University. We used thematic analysis techniques for data analysis, allowing for a constant comparative approach to data contextualization and theme identification.ResultsFocus group discussions revealed vivid menarche and menstruation experiences, shifting period culture, recollections of shame and stigma, and use of various technologies to manage menstruation. Recommendations for community-based programs offering free products included maintaining stock, making informed product choices, and broadly distributing program information to increase awareness of free product placements.ConclusionsFindings offer practical recommendations that will contribute to menstruation management and period poverty solutions for university communities.

Exploring the Poststroke Experiences and Needs of South Asian Communities Living in High-Income Countries: Findings from a Scoping Review.

Despite the high prevalence of stroke among South Asian communities in high-income countries, a comprehensive understanding of their unique experiences and needs after stroke is lacking. This study aimed to synthesize the literature examining the experiences and needs of South Asian community members impacted by stroke and their family caregivers residing in high-income countries. A scoping review methodology was utilized. Data for this review were identified from seven databases and hand-searching reference lists of included studies. Study characteristics, purpose, methods, participant characteristics, results, limitations, recommendations, and conclusions were extracted. Data were analyzed using descriptive qualitative analysis. In addition, a consultative focus group exercise with six South Asian community members who had experienced a stroke and a program facilitator was conducted to inform the review interpretations. A total of 26 articles met the inclusion criteria and were analyzed. Qualitative analysis identified four descriptive categories: (1) rationale for studying the South Asian stroke population (e.g., increasing South Asian population and stroke prevalence), (2) stroke-related experiences (e.g., managing community support versus stigma and caregiving expectations), (3) stroke service challenges (e.g., language barriers), and (4) stroke service recommendations to address stroke service needs (e.g., continuity of care). Several cultural factors impacted participant experiences, including cultural beliefs about illness and caregiving. Focus group participants from our consultation activity agreed with our review findings. The clinical and research recommendations identified in this review support the need for culturally appropriate services for South Asian communities across the stroke care continuum; however, more research is necessary to inform the design and structure of culturally appropriate stroke service delivery models.

Treatment gaps in epilepsy.

Over 50 million people around the world have epilepsy, and yet, epilepsy recognition and access to care are ongoing issues. Nearly 80% of people with epilepsy live in low-and middle-income countries and face the greatest barriers to quality care. However, there are substantial disparities in care within different communities in high-income countries as well. Across the world, under-recognition of seizures continues to be an issue, leading to diagnostic and treatment delays. This stems from issues surrounding stigma, public education, basic access to care, as well as healthcare worker education. In different regions, people may face language barriers, economic barriers, and technological barriers to timely diagnosis and treatment. Even once diagnosed, people with epilepsy often face gaps in optimal seizure control with the use of antiseizure medications. Additionally, nearly one-third of people with epilepsy may be candidates for epilepsy surgery, and many either do not have access to surgical centers or are not referred for surgical evaluation. Even those who do often experience delays in care. The purpose of this review is to highlight barriers to care for people with epilepsy, including issues surrounding seizure recognition, diagnosis of epilepsy, and the initiation and optimization of treatment.

Exploring the poststroke experiences and unmet needs of South Asian communities in high-income countries: a scoping review protocol

IntroductionSouth Asian groups experience a higher burden of stroke and poorer functional outcomes after stroke than their White counterparts. However, within the stroke literature, there has been little focus on...

Headwater-to-consumer Drinking Water Security Assessment Framework and Associated Indicators for Small Communities in High-income Countries

Drinking water insecurity in small and rural, remote, or otherwise marginalized communities in Canada is pervasive and complex with multiple dimensions and impacts. These communities face challenges such as variable source water quality, lack of resources, inappropriate treatment technologies, lack of access to training, difficulties retaining qualified personnel, and ineffective governance structures. Currently, there is a gap in the academic literature with respect to drinking water security assessment frameworks or tools for small and rural, remote, or otherwise marginalized communities, particularly in high income countries. Thus, the objective of this study is to introduce a framework for assessing drinking water security, from headwater to consumer, in the context of small and rural, remote, or otherwise marginalized communities.An indicator-based framework has been developed to evaluate drinking water security, prioritize actions and investments, and support decision-making. The framework builds on expert knowledge and a critical review of security, sustainability, and performance indices of water supply and treatment processes obtained from the literature. The framework is organised into four dimensions of drinking water security from headwaters to consumer: upstream watershed security; source water security; community needs and engagement; and treatment and distribution infrastructure. A list of relevant indicators for each dimension has been compiled to support framework application in a format that is accessible to decision-makers in small and rural, remote, or otherwise marginalized communities.Supplementary InformationThe online version contains supplementary material available at 10.1007/s11269-021-02985-2.

Developing indicators of age-friendly neighbourhood environments for urban and rural communities across 20 low-, middle-, and high-income countries

BackgroundBy 2050, the global population of adults 60 + will reach 2.1 billion, surging fastest in low- and middle-income countries (LMIC). In response, the World Health Organization (WHO) has developed indicators of age-friendly urban environments, but these criteria have been challenging to apply in rural areas and LMIC. This study fills this gap by adapting the WHO indicators to such settings and assessing variation in their availability by community-level urbanness and country-level income.MethodsWe used data from the Prospective Urban and Rural Epidemiology (PURE) study’s environmental-assessment tools, which integrated systematic social observation and ecometrics to reliably capture community-level environmental features associated with cardiovascular-disease risk factors. The results of a scoping review guided selection of 18 individual indicators across six distinct domains, with data available for 496 communities in 20 countries, including 382 communities (77%) in LMIC. Finally, we used both factor analysis of mixed data (FAMD) and multitrait-multimethod (MTMM) approaches to describe relationships between indicators and domains, as well as detailing the extent to which these relationships held true within groups defined by urbanness and income.ResultsTogether, the results of the FAMD and MTMM approaches indicated substantial variation in the relationship of individual indicators to each other and to broader domains, arguing against the development of an overall score and extending prior evidence demonstrating the need to adapt the WHO framework to the local context. Communities in high-income countries generally ranked higher across the set of indicators, but regular connections to neighbouring towns via bus (95%) and train access (76%) were most common in low-income countries. The greatest amount of variation by urbanness was seen in the number of streetscape-greenery elements (33 such elements in rural areas vs. 55 in urban), presence of traffic lights (18% vs. 67%), and home-internet availability (25% vs. 54%).ConclusionsThis study indicates the extent to which environmental supports for healthy ageing may be less readily available to older adults residing in rural areas and LMIC and augments calls to tailor WHO’s existing indicators to a broader range of communities in order to achieve a critical aspect of distributional equity in an ageing world.

Developing robust indicators of age-friendly neighborhood environments across urban-rural and socioeconomic gradients in 20 countries from five continents

BACKGROUND AND AIM: By 2050, the older-adult population (60+) will reach 2.1 billion, surging fastest in low- and middle-income countries (LMIC). In response, the World Health Organization (WHO) has developed a framework and indicators of age-friendly urban environments, but these criteria have been challenging to apply in rural areas and LMIC. This study fills this gap by adapting these indicators to such settings and assessing variation by country-level income and community-level urban-rural status. METHODS: First, a narrative review identified and described existing healthy-aging audit tools. Next, data were drawn from the Prospective Urban and Rural Epidemiology (PURE) study’s environmental-exposure assessment tools, which relied on systematic social observation and ecometrics to develop objective and subjective indicators relevant to cardiovascular disease. Following a multitrait, multimethod (MTMM) approach to assess convergent and discriminant validity, we specified a set of 23 indicators aligned with WHO’s framework and calculated their values across 496 communities in 20 countries, including 382 communities (77%) located in LMIC. RESULTS:Among the WHO’s eight environmental domains, six were represented in PURE’s environmental data. Overall, 91% of communities had access to parks/recreation and street lighting, while 45% had traffic lights. In addition, 85% of communities offered a public medical clinic, but only 15% a public hospital. Communities in high-income countries rated highest overall, although bus-transit connections were most common in low-income countries (95%). The greatest amount of variation by urbanness was seen in the number of streetscape-greenery elements (55.2 in rural areas vs. 32.5 in urban); traffic lights (17.8% vs. 67.1%); access to universities (32.9% vs. 90.3%); and home-internet availability (24.7% vs. 53.8%). CONCLUSIONS:This study indicates the extent to which environmental supports for healthy aging may be less readily available to older adults residing in rural areas and LMIC, highlighting a critical aspect of equity that is increasingly important to address in an aging world. KEYWORDS: Green space, Walkability, Healthy aging, Methodological study design, International collaboration

Cross-cultural adaptation and validation of revised WHO-ILAR-COPCORD core English questionnaire translated to Bangla.

The Community-Oriented Program for Control of Rheumatic Diseases (COPCORD) is intended to reduce the information deficit about the epidemiology of rheumatic diseases, particularly in rural communities in high-income countries. Multiple studies have been conducted using the WHO-International League of Associations for Rheumatology (ILAR)-COPCORD core questionnaire in Bangladesh using the translated version in the Bangla language. Cross-cultural adaptation and validation of the questionnaire are important to achieve better outcomes. To develop a culturally adapted, valid, and reliable Bangla version of the WHO-ILAR-COPCORD Core English Questionnaire to use as a rheumatic screening instrument among Bangla-speaking people. The original English WHO-ILAR-COPCORD questionnaire was translated into Bangla and adapted in the local socio-cultural context maintaining idiomatic, semantic, experiential, and conceptual equivalence between the English and Bangla versions. Pretesting was carried out among 30 patients and healthy attendants, following standard international recommendations. Content validity of the adapted Bangla version was assessed by the item- and scale-level content validity indices (I-CVI and S-CVI). The adapted Bangla version of the WHO-ILAR-COPCORD questionnaire was used to assess 120 patients with rheumatic problems and healthy individuals. Test-retest reliability was assessed using intraclass correlation coefficients. The Bangla version of the WHO-ILAR-COPCORD questionnaire showed excellent content validity (I-CVI=1, S-CVI=1). The test-retest reliability was also acceptable (intraclass correlation coefficient>0.7). The adapted Bangla version of the WHO-ILAR-COPCORD questionnaire demonstrated acceptable psychometric properties, in terms of content validity and test-retest reliability, for evaluating rheumatic problems in Bangladeshi patients.

Reaching those left behind: knowledge gaps, challenges, and approaches to achieving SDG 6 in high-income countries

Abstract Even as progress has been made in extending access to safe water and sanitation under the Sustainable Development Goals (SDGs), substantial disparities in water, sanitation, and hygiene (WASH) services persist in high-income countries around the world. These gaps in service occur disproportionately among historically marginalized, rural, informal, and Indigenous communities. This paper synthesizes results from a side session convened at the 2020 University of North Carolina, Chapel Hill, Water and Health conference focused on knowledge gaps, challenges, and approaches to achieve SDG 6 among marginalized communities in high-income countries. We provide approaches and next steps to advance sustainable WASH services in communities that have often been overlooked.

Stakeholder perspectives on the implementation and impact of Indigenous health interventions: A systematic review of qualitative studies.

BackgroundEvaluations of health interventions for Indigenous peoples rarely report outcomes that reflect participant and community perspectives of their experiences. Inclusion of such data may provide a fuller picture of the impact of health programmes and improve the usefulness of evaluation assessments.AimTo describe stakeholder perspectives and experiences of the implementation and impact of Indigenous health programmes.MethodsWe conducted a systematic review of qualitative studies evaluating complex health interventions designed for Indigenous communities in high‐income countries. We searched 6 electronic databases (through to January 2020): MEDLINE, PreMEDLINE, Embase, PsycINFO, EconLit and CINAHL and hand‐searched reference lists of relevant articles.ResultsFrom 28 studies involving 677 stakeholders (mostly clinical staff and participants), six main themes were identified: enabling engagement, regaining control of health, improving social health and belonging, preserving community and culture, cultivating hope for a better life, and threats to long‐term programme viability.ConclusionThe prominence of social, emotional and spiritual well‐being as important aspects of the health journey for participants in this review highlights the need to reframe evaluations of health programmes implemented in Indigenous communities away from assessments that focus on commonly used biomedical measures. Evaluators, in consultation with the community, should consistently assess the capacity of health professionals to meet community needs and expectations throughout the life of the programme. Evaluations that include qualitative data on participant and community‐level outcomes can improve decision‐makers' understanding of the impact that health programmes have on communities.Patient or public contributionThis paper is a review of evaluation studies and did not involve patients or the public.

Distance Management of Spinal Disorders During the COVID-19 Pandemic and Beyond: Evidence-Based Patient and Clinician Guides From the Global Spine Care Initiative.

BackgroundThe COVID-19 pandemic has greatly limited patients' access to care for spine-related symptoms and disorders. However, physical distancing between clinicians and patients with spine-related symptoms is not solely limited to restrictions imposed by pandemic-related lockdowns. In most low- and middle-income countries, as well as many underserved marginalized communities in high-income countries, there is little to no access to clinicians trained in evidence-based care for people experiencing spinal pain.ObjectiveThe aim of this study is to describe the development and present the components of evidence-based patient and clinician guides for the management of spinal disorders where in-person care is not available.MethodsUltimately, two sets of guides were developed (one for patients and one for clinicians) by extracting information from the published Global Spine Care Initiative (GSCI) papers. An international, interprofessional team of 29 participants from 10 countries on 4 continents participated. The team included practitioners in family medicine, neurology, physiatry, rheumatology, psychology, chiropractic, physical therapy, and yoga, as well as epidemiologists, research methodologists, and laypeople. The participants were invited to review, edit, and comment on the guides in an open iterative consensus process.ResultsThe Patient Guide is a simple 2-step process. The first step describes the nature of the symptoms or concerns. The second step provides information that a patient can use when considering self-care, determining whether to contact a clinician, or considering seeking emergency care. The Clinician Guide is a 5-step process: (1) Obtain and document patient demographics, location of primary clinical symptoms, and psychosocial information. (2) Review the symptoms noted in the patient guide. (3) Determine the GSCI classification of the patient’s spine-related complaints. (4) Ask additional questions to determine the GSCI subclassification of the symptom pattern. (5) Consider appropriate treatment interventions.ConclusionsThe Patient and Clinician Guides are designed to be sufficiently clear to be useful to all patients and clinicians, irrespective of their location, education, professional qualifications, and experience. However, they are comprehensive enough to provide guidance on the management of all spine-related symptoms or disorders, including triage for serious and specific diseases. They are consistent with widely accepted evidence-based clinical practice guidelines. They also allow for adequate documentation and medical record keeping. These guides should be of value during periods of government-mandated physical or social distancing due to infectious diseases, such as during the COVID-19 pandemic. They should also be of value in underserved communities in high-, middle-, and low-income countries where there is a dearth of accessible trained spine care clinicians. These guides have the potential to reduce the overutilization of unnecessary and expensive interventions while empowering patients to self-manage uncomplicated spinal pain with the assistance of their clinician, either through direct in-person consultation or via telehealth communication.

'Some women are proud of their experience and I have to respect that': an interview-study about midwives' experiences in caring for infibulated women during childbirth in Sweden.

INTRODUCTION As the immigrant communities in high-income countries become larger and increasingly multicultural and ethnically diverse, health professionals are more likely to see girls and women with, or at risk of, female genital mutilation or 'cutting' (FGM/C) in clinical practice. To provide good care and support, other health-care professionals may learn from the experiences of midwifes caring for infibulated women during labour in Sweden. AIM To describe Swedish midwives' experiences in caring for infibulated women during labour. METHODS This is a qualitative study. Semi-structured interviews with six midwives working at obstetric clinics in Sweden used open-ended questions. The interviews were recorded, transcribed verbatim and analysed by using thematic analysis. RESULTS Two main themes were identified: experienced challenges during the process of labour; and midwives' emotional experiences. Midwives experienced challenges during their professional encounters with infibulated women and a variety of emotions were evoked when caring for these women during labour. Lack of general guidelines and standardised routines complicated their work. DISCUSSION The midwives' experiences were negatively affected by organisational factors and being emotionally affected by the fact that these women were not perceived to be given appropriate care because of their FGM/C. Policymakers in Sweden should consider implementing national guidelines for how to care for women exposed to FGM/C, ideally at an early stage in their reproductive life.

International norm development and change: can international law play a meaningful role in curbing the lifestyle disease pandemic?

BackgroundThe magnitude of the noncommunicable epidemic is difficult to overstate. The projected cost of the epidemic is substantial. It disproportionately affects people in low- and middle-income countries as well as poorer and marginalised communities in high-income countries. The international community has taken various steps to address the four modifiable risk factors causing the majority of noncommunicable diseases (NCDs), however, action has so far fallen short of expectations. Both analysts and international institutions are advocating the adoption of a new international legal norm to address the NCD crisis.Main textDrawing on existing knowledge from international relations and international legal studies, this article argues that a new international treaty is not only currently improbable, but also not strictly desirable. In-depth critical analysis and reflection is needed regarding the strengths and weaknesses of a legal approach to addressing the NCD pandemic. The argument is set out in three sections - the first reviews contributions of agentic constructivism, which focus on the process of normative emergence and change, and draws on empirical examples to highlight overlooked aspects of normative development and how they relate to NCD politics. The second engages with the critique of legal principles. Critical approaches to law seek to expose the myths that legal principles are neutral, objective, good. The third section discusses the characteristics of practice in the NCD field and its implications on process and principles for the pursuit of a legal solution to the NCD crisis.ConclusionsAny advocacy for an international norm to address NCDs needs to be nuanced and demonstrate awareness of the nature and character of both the norm development process and resulting international legal principles. As analysts, we are responsible for advocating inclusive and ethical norms, but also for highlighting the implications of inequalities and differences between and within states and societies. There may be a viable international legal instrument that would support dedicated policies to curb the NCD epidemic, but such an instrument needs to be actively advocated for and negotiated with a wide range of stakeholders, navigating a complex international framework of existing norms and conflicting, powerful interests.

The Breast Health Global Initiative 2018 Global Summit on Improving Breast Healthcare Through Resource-Stratified Phased Implementation: Methods and overview.

The Breast Health Global Initiative (BHGI) established a series of resource-stratified, evidence-based guidelines to address breast cancer control in the context of available resources. Here, the authors describe methodologies and health system prerequisites to support the translation and implementation of these guidelines into practice. In October 2018, the BHGI convened the Sixth Global Summit on Improving Breast Healthcare Through Resource-Stratified Phased Implementation. The purpose of the summit was to define a stepwise methodology (phased implementation) for guiding the translation of resource-appropriate breast cancer control guidelines into real-world practice. Three expert consensus panels developedstepwise, resource-appropriate recommendations for implementing these guidelines in low-income and middle-income countries as well as underserved communities in high-income countries. Each panel focused on 1 of 3 specific aspects of breast cancer care: 1) early detection, 2) treatment, and 3) health system strengthening. Key findings from the summit and subsequent article preparation included the identification of phased-implementation prerequisites that were explored during consensus debates. These core issues and concepts are key components for implementing breast health care that consider real-world resource constraints. Communication and engagement across all levels of care is vital to any effectively operating health care system, including effective communication with ministries of health and of finance, to demonstrate needs, outcomes, and cost benefits. Underserved communities at all economic levels require effective strategies to deploy scarce resources to ensure access to timely, effective, and affordable health care. Systematically strategic approaches translating guidelines into practice are needed to build health system capacity to meet the current and anticipated global breast cancer burden.

An innovation platform for diffusing public health practices across a global network

Hospitals and health systems in high-income countries (HIC) develop the capacities of peer healthcare organizations around the world by diffusing clinical, quality, and public health improvement practices in lower and middle-income countries (LMIC). In turn, these HIC healthcare institutions are exposed to innovative approaches developed and used by global communities to advance care despite resource constraints in the LMIC contexts. Attention has been growing in recent years to the potential these innovations can have to improve care delivery, lower costs, and drive quality within resource-constrained communities in HIC. Often referred to as “reverse innovations,” the identification, adaptation, and diffusion of these practices face challenges in uptake related to limited evidence, perceptions of poor quality or irrelevance, and a complicated regulatory and policy environment. This paper suggests the development of an approach to improve the capacity of the healthcare organizations in the HIC as well, based on lessons learned from diffusing practices in LMIC. It concludes with the need for a knowledge platform to support innovation diffusion in both directions.

The End Rheumatic Heart Disease in Australia Study of Epidemiology (ERASE) Project: data sources, case ascertainment and cohort profile.

PurposeAcute rheumatic fever (ARF) and rheumatic heart disease (RHD) persist as public health issues in developing countries and among disadvantaged communities in high-income countries, with rates in Aboriginal and Torres Strait Islander peoples in Australia among the highest recorded globally. A robust evidence base is critical to support policy recommendations for eliminating RHD, but available data are fragmented and incomplete. The End RHD in Australia: Study of Epidemiology (ERASE) Project aims to provide a comprehensive database of ARF and RHD cases in Australia as a basis for improved monitoring and to assess prevention and treatment strategies. The objective of this paper is to describe the process for case ascertainment and profile of the study cohort.Patients and methodsThe ERASE database has been built using linked administrative data from RHD registers, inpatient hospitalizations, and death registry data from 2001 to 2017 (mid-year). Additional linked datasets are available. The longitudinal nature of the data is harnessed to estimate onset and assess the progression of the disease. To accommodate systematic limitations in diagnostic coding for RHD, hospital-only identified RHD has been determined using a purposefully developed prediction model.ResultsOf 132,053 patients for whom data were received, 42,064 are considered true cases of ARF or RHD in the study period. The patient population under 60 years in the compiled dataset is more than double the number of patients identified in ARF/RHD registers (12,907 versus 5049). Non-registered patients were more likely to be older, non-Indigenous, and at a later disease stage.ConclusionThe ERASE Project has created an unprecedented linked administrative database on ARF and RHD in Australia. These data provide a critical baseline for efforts to end ARF/RHD in Australia. The methodological work conducted to compile this database resulted in significant improvements in the robustness of epidemiological estimates and entails valuable lessons for ARF/RHD research globally.

Data gaps in adolescent fertility surveillance in middle-income countries in Latin America and South Eastern Europe: Barriers to evidence-based health promotion.

Adolescent health is a major global priority. Yet, as recently described by the World Health Organization (WHO), increased recognition of the importance of adolescent health rarely transforms into action. One challenge is lack of data, particularly on adolescent fertility. Adolescent pregnancy and childbirth are widespread and affect lifetime health and social outcomes of women, men, and families. Other important components of adolescent fertility include abortion, miscarriage, and stillbirth. Access to reliable, consistently-collected data to understand the scope and complexity of adolescent fertility is critical for designing strong research, developing meaningful policies, building effective programs, and evaluating success in these domains. Vital surveillance data can be challenging to obtain in general, and particularly in low- and middle-income countries and other under-resourced settings (including rural and indigenous communities in high-income countries). Definitions also vary, making comparisons over time and across locations challenging. Informed by the Adolescence and Motherhood Research project in Brazil and considering relevance to the Southern Eastern European (SEE) context, this article focuses on challenges in surveillance data for adolescent fertility for middle-income countries. Specifically, we review the literature to: (1) discuss the importance of understanding adolescent fertility generally, and (2) highlight relevant challenges and complexity in collecting adolescent fertility data, then we (3) consider implications of data gaps on this topic for selected middle-income countries in Latin America and SEE, and (4) propose next steps to improve adolescent fertility data for evidence-based health promotion in the middle-income country context.