Reporting of equity in observational epidemiology: A methodological review.

Background: Observational studies can inform how we understand and address persisting health inequities through the collection, reporting and analysis of health equity factors. However, the extent to which the analysis and reporting of equity-relevant aspects in observational research are generally unknown. Thus, we aimed to systematically evaluate how equity-relevant observational studies reported equity considerations in the study design and analyses. Methods: We searched MEDLINE for health equity-relevant observational studies from January 2020 to March 2022, resulting in 16 828 articles. We randomly selected 320 studies, ensuring a balance in focus on populations experiencing inequities, country income settings, and coronavirus disease 2019 (COVID-19) topic. We extracted information on study design and analysis methods. Results: The bulk of the studies were conducted in North America (n = 95, 30%), followed by Europe and Central Asia (n = 55, 17%). Half of the studies (n = 171, 53%) addressed general health and well-being, while 49 (15%) focused on mental health conditions. Two-thirds of the studies (n = 220, 69%) were cross-sectional. Eight (3%) engaged with populations experiencing inequities, while 22 (29%) adapted recruitment methods to reach these populations. Further, 67 studies (21%) examined interaction effects primarily related to race or ethnicity (48%). Two-thirds of the studies (72%) adjusted for characteristics associated with inequities, and 18 studies (6%) used flow diagrams to depict how populations experiencing inequities progressed throughout the studies. Conclusions: Despite over 80% of the equity-focused observational studies providing a rationale for a focus on health equity, reporting of study design features relevant to health equity ranged from 0-95%, with over half of the items reported by less than one-quarter of studies. This methodological study is a baseline assessment to inform the development of an equity-focussed reporting guideline for observational studies as an extension of the well-known Strengthening Reporting of Observational Studies in Epidemiology (STROBE) guideline.

Definitions, terminology, and related concepts of "racial health equity": a scoping review protocol.

BACKGROUND: In the USA, access to quality healthcare varies greatly across racial and ethnic groups, resulting in significant health disparities. A new term, "racial health equity" (RHE), is increasingly reported in the medical literature, but there is currently no consensus definition of the term. Additionally, related terms such as "health disparities," "health inequities," and "equality" have been inconsistently used when defining RHE. METHODS: The primary purpose of this scoping review is to investigate the current use and underlying concepts used to define racial health equity. The study will address two key questions: (1) "What terminology and definitions have been used to characterize RHE?" and (2) "What knowledge gaps and challenges are present in the current state of RHE research and theory?" The review will collect and analyze data from three sources: (1) websites from key national and international health organizations, (2) theoretical and narrative published articles, and (3) evidence synthesis studies addressing interventions targeting racial health equity and minority stakeholder engagement. DISCUSSION: Defining "racial health equity" and related terminology is the first step to advancing racial health equity within the USA. This review aims to offer an improved understanding of RHE constructs and definitions, bringing greater unity to national racial health equity research efforts across disciplines. SYSTEMATIC REVIEW REGISTRATION: This protocol is registered with the Open Science Framework at https://osf.io/7pvzq .

Improving social justice in observational studies: protocol for the development of a global and Indigenous STROBE-equity reporting guideline.

BACKGROUND: Addressing persistent and pervasive health inequities is a global moral imperative, which has been highlighted and magnified by the societal and health impacts of the COVID-19 pandemic. Observational studies can aid our understanding of the impact of health and structural oppression based on the intersection of gender, race, ethnicity, age and other factors, as they frequently collect this data. However, the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guideline, does not provide guidance related to reporting of health equity. The goal of this project is to develop a STROBE-Equity reporting guideline extension. METHODS: We assembled a diverse team across multiple domains, including gender, age, ethnicity, Indigenous background, disciplines, geographies, lived experience of health inequity and decision-making organizations. Using an inclusive, integrated knowledge translation approach, we will implement a five-phase plan which will include: (1) assessing the reporting of health equity in published observational studies, (2) seeking wide international feedback on items to improve reporting of health equity, (3) establishing consensus amongst knowledge users and researchers, (4) evaluating in partnership with Indigenous contributors the relevance to Indigenous peoples who have globally experienced the oppressive legacy of colonization, and (5) widely disseminating and seeking endorsement from relevant knowledge users. We will seek input from external collaborators using social media, mailing lists and other communication channels. DISCUSSION: Achieving global imperatives such as the Sustainable Development Goals (e.g., SDG 10 Reduced inequalities, SDG 3 Good health and wellbeing) requires advancing health equity in research. The implementation of the STROBE-Equity guidelines will enable a better awareness and understanding of health inequities through better reporting. We will broadly disseminate the reporting guideline with tools to enable adoption and use by journal editors, authors, and funding agencies, using diverse strategies tailored to specific audiences.

Improving Social Justice in COVID-19 Health Research: Interim Guidelines for Reporting Health Equity in Observational Studies.

The COVID-19 pandemic has highlighted the global imperative to address health inequities. Observational studies are a valuable source of evidence for real-world effects and impacts of implementing COVID-19 policies on the redistribution of inequities. We assembled a diverse global multi-disciplinary team to develop interim guidance for improving transparency in reporting health equity in COVID-19 observational studies. We identified 14 areas in the STROBE (Strengthening the Reporting of Observational Studies in Epidemiology) checklist that need additional detail to encourage transparent reporting of health equity. We searched for examples of COVID-19 observational studies that analysed and reported health equity analysis across one or more social determinants of health. We engaged with Indigenous stakeholders and others groups experiencing health inequities to co-produce this guidance and to bring an intersectional lens. Taking health equity and social determinants of health into account contributes to the clinical and epidemiological understanding of the disease, identifying specific needs and supporting decision-making processes. Stakeholders are encouraged to consider using this guidance on observational research to help provide evidence to close the inequitable gaps in health outcomes.

Integrating a problem-solving intervention with routine care to improve psychosocial functioning among mothers of children with sickle cell disease: A randomized controlled trial.

OBJECTIVE: To assess the feasibility of a problem-solving skills training intervention in improving psychological outcomes in mothers of infants with sickle cell disease (SCD). DESIGN AND METHODS: This parallel randomized controlled trial recruited 64 babies with SCD, 6 to 12 months of age, and their mothers. Baseline measurements assessed mothers' coping and problem-solving skills, depression, and parental stress before random assignment to intervention or control groups (n = 32 each). Problem-solving skills intervention was delivered through 6 monthly sessions, when babies attended for routine penicillin prophylaxis. All measurements were repeated for both groups at the end of the intervention period. Intention to treat analysis used repeated measures mixed models with the restricted estimation maximum likelihood approach. RESULTS: The problem-solving intervention had no significant effect on mothers' problem-solving skills (adjusted treatment effect: -1.69 points (95% CI:-5.62 to 2.25)), coping behaviours (adjusted treatment effect: 0.65 points (95% CI:- -7.13 to 8.41)) or depressive symptoms (adjusted treatment effect: -0.41 (95% CI: -6.00 to 5.19)). It reduced mothers' level of difficulty in managing stressful events by 9.5 points (95% CI (-16.86 to -2.16); effect size: 0.21 SD). In the subgroup of mothers at risk of depression (n = 31 at baseline), the intervention reduced depression scores with treatment effect of 10.4 points (95%CI: -18.83 to -1.88; effect size: 0.67 SD). CONCLUSION: This problem-solving skills intervention study suggests feasibility and possible efficacy in improving some maternal outcomes. Further refinement and culturally appropriate adaptations of the intervention could lead to stronger effects.

Ideal cardiovascular health in urban Jamaica: prevalence estimates and relationship to community property value, household assets and educational attainment: a cross-sectional study.

OBJECTIVE: Ideal cardiovascular health (ICH) is associated with greater longevity and reduced morbidity, but no research on ICH has been conducted in Jamaica. We aimed to estimate the prevalence of ICH in urban Jamaica and to evaluate associations between ICH and community, household, and individual socioeconomic status (SES). DESIGN: Cross-sectional study. SETTING: Urban communities in Jamaica. PARTICIPANTS: 360 men and 665 women who were urban residents aged ≥20 years from a national survey, the Jamaica Health and Lifestyle Survey 2016-2017. EXPOSURES: Community SES, using median land values (MLV); household SES, using number of household assets; and individual SES, using education level. PRIMARY OUTCOME: The main outcome variable was ICH, defined as having five or more of seven ICH characteristics (ICH-5): current non-smoking, healthy diet, moderate physical activity, normal body mass index, normal blood pressure, normal glucose and normal cholesterol. Prevalence was estimated using weighted survey design and logistic regression models were used to evaluate associations. RESULTS: The prevalence of overall ICH (seven characteristics) was 0.51%, while the prevalence of ICH-5 was 22.9% (male 24.5%, female 21.5%, p=0.447). In sex-specific multivariable models adjusted for age, education, and household assets, men in the lower tertiles of community MLV had lower odds of ICH-5 compared with men in the upper tertile (lowest tertile: OR 0.33, 95% CI 0.12 to 0.91, p=0.032; middle tertile: OR 0.46, 95% CI 0.20 to 1.04, p=0.062). Women from communities in the lower and middle tertiles of MLV also had lower odds of ICH-5, but the association was not statistically significant. Educational attainment was inversely associated with ICH-5 among men and positively associated among women. CONCLUSION: Living in poorer communities was associated with lower odds of ICH-5 among men in Jamaica. The association between education level and ICH-5 differed in men and women.

Neighbourhood socioeconomic characteristics and blood pressure among Jamaican youth: a pooled analysis of data from observational studies.

INTRODUCTION: Neighbourhood characteristics are associated with several diseases, but few studies have investigated the association between neighbourhood and health in Jamaica. We evaluated the relationship between neighbourhood socioeconomic status (SES) and blood pressure (BP) among youth, 15-24 years old, in Jamaica. METHODS: A pooled analysis was conducted using data from three studies (two national surveys and a birth cohort), conducted between 2005-2008, with individual level BP, anthropometric and demographic data, and household SES. Data on neighbourhood SES were obtained from the Mona Geo-Informatics Institute. Neighbourhood was defined using community boundaries from the Social Development Commission in Jamaica. Community characteristics (poverty, unemployment, dependency ratio, population density, house size, and proportion with tertiary education) were combined into SES scores using principal component analysis (PCA). Multivariable analyses were computed using mixed effects multilevel models. RESULTS: Analyses included 2,556 participants (1,446 females; 1,110 males; mean age 17.9 years) from 306 communities. PCA yielded two neighbourhood SES variables; the first, PCA-SES1, loaded highly positive for tertiary education and larger house size (higher value = higher SES); while the second, PCA-SES2, loaded highly positive for unemployment and population density (higher value = lower SES). Among males, PCA-SES1 was inversely associated with systolic BP (ß-1.48 [95%CI -2.11, -0.84] mmHg, p < 0.001, for each standard deviation unit increase in PCA-SES1 score) in multivariable model accounting for age, household SES, study, BMI, fasting glucose, physical activity and diet. PCA-SES1 was not significantly associated with systolic BP among females (ß -0.48 [-1.62, 0.66], p = 0.410) in a similar model. Associations for PCA-SES2 was assessed using linear splines to account for non-linear effects. The were no significant associations between systolic BP and PCA-SES2 among males. Among females, higher PCA-SES2 (i.e. lower SES) was associated with higher systolic BP at spline 2 [z-score -1 to 0] (ß4.09 [1.49, 6.69], p = 0.002), but with lower systolic BP at spline 3 [z-core 0 to 1] (ß-2.81 [-5.04, -0.59], p = 0.013). There were no significant associations between diastolic BP and PCA-SES1, but PCA-SES2 showed non-linear associations with diastolic BP particularly among males. CONCLUSION: Higher neighbourhood SES was inversely associated with systolic BP among male Jamaican youth; there were non-linear associations between neighbourhood SES and systolic BP among females and for diastolic BP for both males and females.

Interventions for treating neuropathic pain in people with sickle cell disease.

BACKGROUND: Pain is the hallmark of sickle cell disease (SCD) and it can be severe, frequent and unpredictable. Although nociceptive pain is more common, at times, people with SCD may have neuropathic pain. The latter can occur due to peripheral or central nerve injury. This review is focused on identifying treatment of only painful sensory neuropathy in people with SCD. OBJECTIVES: To determine the effectiveness and safety of any pharmacological or non-pharmacological therapies for treating neuropathic pain in people with SCD. SEARCH METHODS: We searched the Cochrane Cystic Fibrosis and Genetic Disorders Group's Haemoglobinopathies Trials Register, compiled from electronic database searches and handsearching of journals and conference abstract books. We also searched trial registries, the reference lists of relevant articles and reviews and contacted experts in the field.Date of last search: 31 January 2019. SELECTION CRITERIA: Randomised controlled trials (RCTs) (parallel or cross-over in design), quasi-RCTs of pharmacological or non-pharmacological therapies for treating neuropathic pain in people with SCD compared to placebo or another intervention in any category (i.e. pharmacological or non-pharmacological). DATA COLLECTION AND ANALYSIS: Two review authors independently assessed all trials identified by the searches and extracted relevant data. Two authors independently assessed the risk of bias in the selected trials using the Cochrane risk of bias tool. Two review authors independently rated the quality of the evidence for each outcome using the GRADE guidelines. MAIN RESULTS: One RCT of 22 participants with SCD, conducted in the USA was included in this review. Participants were randomly assigned to either pregabalin (n = 11) or placebo (n = 11). Oral pregabalin was administered at an initial dose of 75 mg twice daily. The drug was titrated at increments of 75 mg to a maximum of 600 mg daily or decreased by 75 mg per day if necessary, based on clinical presentation and pain level. Neuropathic pain was assessed using self-reports on the Leeds Assessment of Neuropathic Symptoms and Signs (S-LANNS) scale and the Neuropathic Pain Symptom Inventory (NPSI), where higher scores were indicative of more pain. Outcomes included self-reported pain, quality of life and withdrawal due to adverse effects measured at baseline and monthly for three months post-intervention. The overall risk of bias was low with a high risk of bias due to attrition.In relation to this reviews primary outcomes, for self-reported neuropathic pain relief, given the paucity of data, we are very uncertain whether there is a difference between the pregabalin and placebo groups at the end of three months as measured by the S-LANSS scale, mean difference (MD) -2.00 (95% confidence interval (CI) -9.18 to 5.18), or the NPSI scale, MD -11.10 (95% CI -33.97 to 11.77) (very low-quality evidence). There was no report of 'Patient Global Impression of Change' in the included trial.Although the mean quality of life scores (Short Form-36) at three months showed small increases in seven of the eight domains post-intervention in the pregabalin group as compared to the placebo group, this was very low-quality evidence and we are very uncertain whether pregabalin increases quality of life. Neither of our pre-defined outcomes of 'time to improvement of symptoms' or 'changes in sleep quality', were measured in the included trial.While treatment-related adverse effects appeared higher in pregabalin group than the placebo group at three months, this was very low-quality evidence and we are very uncertain whether there is a difference, RR 1.33 (95% CI 0.39 to 4.62) (very low-quality evidence). There was one withdrawal for adverse effects in the pregabalin group while three people withdrew or dropped out from the placebo group due to adverse effects and complications and hospitalisation related to SCD. AUTHORS' CONCLUSIONS: The included trial provided very low-quality evidence. Self-reported pain relief was greater in the pregabalin group compared to the placebo control group but only using the S-LANSS scale and we are very unsure whether there is a difference. While the pregabalin group tended to have improved quality of life over the duration of the trial, this was very low-quality evidence and we are uncertain whether there is a difference. Adverse effects and withdrawals were similar across the treatment and placebo control group in trial. There are both insufficient trials addressing this review question and insufficient outcomes addressed in the single included RCT. Therefore, there is still a significant gap in evidence on interventions for neuropathic pain in people with SCD.

Neighbourhood characteristics and cumulative biological risk: evidence from the Jamaica Health and Lifestyle Survey 2008: a cross-sectional study.

OBJECTIVE: To examine whether neighbourhood characteristics are associated with cumulative biological risk (CBR) and sex differences in CBR in a nationally representative sample in Jamaica, a small island developing country with increasing prevalence of non-communicable diseases (NCDs). DESIGN: Cross-sectional study SETTING: A population-based cross-sectional survey, the Jamaica Health and Lifestyle Survey 2008 (JHLS II) recruited persons at their homes over a 4 month period from all 14 parishes and 113 neighbourhoods defined as enumeration districts (EDs). PARTICIPANTS: 2544 persons aged 15-74 years old from the 2008 Jamaica Health and Lifestyle Survey (JHLS II), who completed interviewer-administered questionnaires and had biomarkers assessed, and whose home addresses could be reliably geocoded. PRIMARY OUTCOME: A summary measure CBR was created using seven markers-systolic and diastolic blood pressure readings, waist circumference, body mass index, total cholesterol, fasting blood glucose levels and self-reported asthma. Weighted multilevel models examined clustering, using the intraclass correlation coefficient (ICC), of CBR across neighbourhoods and the impact of neighbourhood characteristics (recreational space availability and neighbourhood disorder) on CBR. RESULTS: Women had significantly higher mean CBR scores than men across all age groups. There was significant clustering of CBR by ED, and among women versus men (ICC: F=6.9%, M=0.7%). Women living in more disordered neighbourhoods were 26% more likely to have high CBR as those in less disordered ones (aOR=1.26, 95% CI=1.08 to 1.47; p<0.05). Individuals living in EDs with greater recreational space availability were 25% less likely to have a high CBR (aOR=0.75, 95% CI=0.64 to 0.90; p<0.05). CONCLUSIONS: Policy-makers in Jamaica should pay greater attention to neighbourhood factors such as recreational space availability and neighbourhood disorder that may contribute to CBR in any effort to curtail the epidemic of NCDs.

Acute pancreatitis: A 7 year retrospective cohort study of the epidemiology, aetiology and outcome from a tertiary hospital in Jamaica.

BACKGROUND: Acute pancreatitis (AP) is a significant cause of acute abdominal pain, morbidity and hospitalisation. There was previously a dearth of studies exploring the incidence, risk factors and outcome of AP in the Caribbean region. MATERIALS AND METHODS: All patients with a diagnosis of AP admitted to the University Hospital of the West Indies (UHWI) between 2006 and 2012 were reviewed. The epidemiological profile, risk factors, clinical presentation and outcomes of patients with AP were retrospectively studied. RESULTS: There were 70 females and 21 males with a median age of 44 years (range 2-86). The median age of males was significantly higher than that of females (p = 0.041). The incidence of AP was 74 per 100,000 admissions per year. Vomiting and abdominal tenderness were noted in the majority of patients. The most common aetiology was biliary disease (71.4%), idiopathic (12%), post-ERCP (6.6%) and alcohol (5.5%). Alcoholic pancreatitis was only seen in males whereas idiopathic and post-ERCP pancreatitis only occurred in females. The mean duration of hospitalisation was 9.51 ± 8.28 days. Disease severity was mild in 61.1%, moderately severe in 26.7%, and severe in 12.2% of patients. Factors associated with more severe disease included overweight/obesity, idiopathic aetiology and post-ERCP status. The case fatality rate was 2%. CONCLUSION: The incidence of AP was 74/100,000 hospital admissions annually. There was an unusual female preponderance, with biliary pancreatitis being the most common type occurring at an equal frequency among males and females. Only 12.2% of the total cases seen were severe. The case fatality rate was 2%. Local health policy should target timely interventions for biliary pancreatitis and should also address the local factors affecting disease severity.

Educational Health Disparities in Cardiovascular Disease Risk Factors: Findings from Jamaica Health and Lifestyle Survey 2007-2008.

OBJECTIVES: Socioeconomic disparities in health have emerged as an important area in public health, but studies from Afro-Caribbean populations are uncommon. In this study, we report on educational health disparities in cardiovascular disease (CVD) risk factors (hypertension, diabetes mellitus, hypercholesterolemia, and obesity), among Jamaican adults. METHODS: We analyzed data from the Jamaica Health and Lifestyle Survey 2007-2008. Trained research staff administered questionnaires and obtained measurements of blood pressure, anthropometrics, glucose and cholesterol. CVD risk factors were defined by internationally accepted cut-points. Educational level was classified as primary or lower, junior secondary, full secondary, and post-secondary. Educational disparities were assessed using age-adjusted or age-specific prevalence ratios and prevalence differences obtained from Poisson regression models. Post-secondary education was used as the reference category for all comparisons. Analyses were weighted for complex survey design to yield nationally representative estimates. RESULTS: The sample included 678 men and 1,553 women with mean age of 39.4 years. The effect of education on CVD risk factors differed between men and women and by age group among women. Age-adjusted prevalence of diabetes mellitus was higher among men with less education, with prevalence differences ranging from 6.9 to 7.4 percentage points (p < 0.05 for each group). Prevalence ratios for diabetes among men ranged from 3.3 to 3.5 but were not statistically significant. Age-specific prevalence of hypertension was generally higher among the less educated women, with statistically significant prevalence differences ranging from 6.0 to 45.6 percentage points and prevalence ratios ranging from 2.5 to 4.3. Similarly, estimates for obesity and hypercholesterolemia suggested that prevalence was higher among the less educated younger women (25-39 years) and among more educated older women (40-59 and 60-74 years). There were no statistically significant associations for diabetes among women, or for hypertension, high cholesterol, or obesity among men. CONCLUSION: Educational health disparities were demonstrated for diabetes mellitus among men, and for obesity, hypertension, and hypercholesterolemia among women in Jamaica. Prevalence of diabetes was higher among less educated men, while among younger women the prevalence of hypertension, hypercholesterolemia, and obesity was higher among those with less education.

Educational health disparities in hypertension and diabetes mellitus among African descent populations in the Caribbean and the USA: a comparative analysis from the Spanish town cohort (Jamaica) and the Jackson heart study (USA).

BACKGROUND: Studies have suggested that social inequalities in chronic disease outcomes differ between industrialized and developing countries, but few have directly compared these effects. We explored inequalities in hypertension and diabetes prevalence between African-descent populations with different levels of educational attainment in Jamaica and in the United States of America (USA), comparing disparities within each location, and between countries. METHODS: We analyzed baseline data from the Jackson Heart Study (JHS) in the USA and Spanish Town Cohort (STC) in Jamaica. Participants reported their highest level of educational attainment, which was categorized as 'less than high school' (HS). Educational disparities in the prevalence of hypertension and diabetes were examined using prevalence ratios (PR), controlling for age, sex and body mass index (BMI). RESULTS: Analyses included 7248 participants, 2382 from STC and 4866 from JHS, with mean age of 47 and 54 years, respectively (p < 0.001). Prevalence for both hypertension and diabetes was significantly higher in the JHS compared to STC, 62% vs. 25% (p < 0.001) and 18% vs. 13% (p < 0.001), respectively. In bivariate analyses there were significant disparities by education level for both hypertension and diabetes in both studies; however, after accounting for confounding or interaction by age, sex and BMI these effects were attenuated. For hypertension, after adjusting for age and BMI, a significant education disparity was found only for women in JHS, with PR of 1.10 (95% CI 1.04-1.16) for < HS vs > HS and 1.07 (95% CI 1.01-1.13) for HS vs > HS. For diabetes; when considering age-group and sex specific estimates adjusted for BMI, among men: significant associations were seen only in the 45-59 years age-group in JHS with PR 1.84 (95% CI 1.16-2.91) for < HS vs > HS. Among women, significant PR comparing < HS to > HS was seen for all three age-groups for JHS, but not in STC; PR were 3.95 (95% CI 1.94-8.05), 1.53 (95% CI 1.10-2.11) and 1.32 (95% CI 1.06-1.64) for 25-44, 45-59 and 60-74 age-groups, respectively. CONCLUSION: In Jamaica, educational disparities were largely explained by age, sex and BMI, while in the USA these disparities were larger and persisted after accounting these variables.

Interventions for patients and caregivers to improve knowledge of sickle cell disease and recognition of its related complications.

BACKGROUND: Sickle cell disease is a group of genetic diseases which is especially prevalent in tropical and subtropical regions; however, forced migration and ongoing population movement have spread it throughout the world, with estimated birth rates reaching 0.49 per 1000 in the Americas, 0.07 per 1000 in Europe, 0.68 per 1000 in South and Southeast Asia, and 10.68 per 1000 in Africa. Life for individuals with sickle cell disease can be affected by repeated acute complications and compounded by progressive organ damage. Studies reveal that when people with chronic illness learn self-management, their clinical outcomes and quality of life improves; and they show lower dependence on healthcare services. There are, however, no reviews identifying which interventions improve knowledge and little is known about the impact of patient or care-giver knowledge on clinical and psychosocial outcomes in people with sickle cell disease. OBJECTIVES: 1. To determine the effectiveness of patient- and caregiver-centred educational interventions for changing knowledge and understanding of sickle cell disease among patients as well as caregivers of people with the disease.2. To assess the effectiveness and safety of patient- and caregiver-centred educational interventions and programs for the recognition of signs and symptoms of disease-related morbidity, adherence to treatment and healthcare utilization in patients with sickle cell disease. SEARCH METHODS: The authors searched the Cochrane Cystic Fibrosis and Genetic Disorders Group Haemoglobinopathies Trials Register, compiled from electronic database searches and handsearching of journals and conference abstract books. Additional trials were sought from the reference lists of the trials and reviews identified by the search strategy.Date of last search: 11 April 2016. SELECTION CRITERIA: Randomized and quasi-randomized controlled trials which evaluate the effectiveness of individual- and group-based interventions for either the patient with sickle cell disease or their caregivers, or both. Eligible interventions will aim to change knowledge, attitudes or skills, improve psychosocial aspects of the disease as well as treatment adherence and healthcare utilization. Trials evaluating the intervention versus no program, comparing two interventions and those which are part of a multi-faceted intervention to improve a range of sickle cell-related health outcomes are all eligible for inclusion. DATA COLLECTION AND ANALYSIS: Two review authors independently selected trials based on stated inclusion criteria and thereafter examined each selected report to extract data using a prepared, piloted, data collection form. A third author assisted in reaching consensus if there were any discrepancies. Similarly, risk of bias was assessed by two authors and verified by a third author. MAIN RESULTS: A total of 12 trials (11 randomized controlled trials and one quasi-randomized trial) of 563 people with HbSS, HbSC or HbSßthal, aged six to 35 years old, were included in the review; the majority of participants were African-American. Interventions ranged from a total of one hour to weekly sessions for eight weeks and the post-intervention assessments ranged from the end of the intervention period to 12 months after completion. The heterogeneity of the included trials, which encompasses setting, inclusion and exclusion criteria, interventional method and time of assessment, ranged from 'not important' to 'moderate to substantial' for different review outcomes. The overall risk of bias was low for selective reporting, unclear for random sequence generation, allocation concealment, blinding of participants and blinding of outcome assessment. Incomplete outcome reporting and blinding of personnel showed mixed bias representations.Patient knowledge was assessed by four trials (160 participants) with moderate to substantial heterogeneity. There was evidence that educational programs improved patient knowledge, standardised mean difference 0.87 points (95% confidence interval 0.28 to 1.45, moderate quality evidence), which improved further when a trial with high bias was removed in a sensitivity analysis. Caregiver knowledge, reported in a single trial of 20 families, also showed an improvement, standardised mean difference 0.52 points (95% confidence interval 0.03 to 1.00, moderate quality evidence). The effect on patient knowledge was sustained at longer follow-up periods, whereas the effect on caregiver knowledge was not sustained.There were two primary outcomes related to the effectiveness of educational programs on the recognition of signs and symptoms of disease-related morbidity. No comparative data were reported for patients or caregivers (or both) recognising signs and symptoms leading to self-management. Data from two trials were analysed for the utilization of health services and showed no evidence of an effect, mean difference 0.33 (95% confidence interval -0.57 to 1.23, moderate quality evidence).With regard to the review's secondary outcomes, depression showed a statistically significant decline in intervention groups, standardised mean difference -0.66 points (95% confidence interval -1.18, to -0.14, moderate quality evidence). Adherence to treatment was not assessed in any of the identified trials. No effects of interventions were seen on coping, family relationships or health-related quality of life of patients.The quality of evidence was low for positive coping and moderate for child knowledge, healthcare utilization and depression. This suggests that further research is likely to have an important impact on our confidence in the estimate of effect and may change the estimates. AUTHORS' CONCLUSIONS: This review identifies important positive effects of educational interventions on improving patient knowledge of sickle cell disease and depression. Effects on patients' knowledge were maintained for longer than for caregivers. The effect on knowledge was significant but small and whether it offers any clinical benefit is uncertain. Significant factors limiting these effects could be trials being under powered as well as attrition rates. Effects were not statistically significant in assessments of secondary outcomes, possibly due to the paucity of the number of trials and patients and caregivers. Trials showed moderate to high heterogeneity which might impact the results. To better study effects on outcomes, further controlled trials are needed with rigorous attention given to improve recruitment and retention and to decrease bias. Predetermined protocols using similar measurements should be used across multiple sites.

Disparities in hypertension among black Caribbean populations: a scoping review by the U.S. Caribbean Alliance for Health Disparities Research Group (USCAHDR).

BACKGROUND: Despite the large body of research on racial/ethnic disparities in health, there are limited data on health disparities in Caribbean-origin populations. This scoping review aimed to analyze and synthesize published and unpublished literature on the disparities in hypertension and its complications among Afro-Caribbean populations. METHODS: A comprehensive protocol, including a thorough search strategy, was developed and used to identify potentially relevant studies. Identified studies were then screened for eligibility using pre-specified inclusion/exclusion criteria. An extraction form was developed to chart data and collate study characteristics including methods and main findings. Charted information was tagged by disparity indicators and thematic analysis performed. Disparity indicators evaluated include ethnicity, sex, socioeconomic status, disability, sexual orientation and geographic location. Gaps in the literature were identified and extrapolated into a gap map. RESULTS: A total of 455 hypertension related records, published between 1972 and 2012, were identified and screened. Twenty-one studies met inclusion criteria for detailed analysis. The majority of studies were conducted in the United Kingdom and utilized a cross-sectional study design. Overall, studies reported a higher prevalence of hypertension among Caribbean blacks compared to West African blacks and Caucasians. Hypertension and its related complications were highest in persons with low socioeconomic status. Gap analysis showed limited research data reporting hypertension incidence by sex and socioeconomic status. No literature was found on disability status or sexual orientation as it relates to hypertension. Prevalence and morbidity were the most frequently reported outcomes. CONCLUSION: The literature on hypertension health disparities in Caribbean origin populations is limited. Future research should address these knowledge gaps and develop approaches to reduce them.

Disparities in cardiovascular disease among Caribbean populations: a systematic literature review.

BACKGROUND: Cardiovascular diseases (CVD) are the predominant cause of death globally. The large health disparities in the distribution of the burden of disease seen in developed and developing countries are of growing concern. Central to this concern is the poor outcome which is seen disproportionately in socially disadvantaged groups and racial/ethnic minorities. The aim of the study was to conduct a systematic literature review to investigate the nature of cardiovascular disease health disparities among Afro-Caribbean origin populations and identify current knowledge gaps. METHODS: A systematic literature review including a detailed search strategy was developed to search MEDLINE and other research databases. Using an a priori protocol peer-reviewed publications and grey literature articles were retrieved and screened and relevant data extracted by two independent review authors. Thematic analysis was done according to CVD outcomes and measures of disparity including age, sex, ethnicity and socioeconomic status. RESULTS: The search retrieved 665 articles of which 22 met the inclusion criteria. Most studies were conducted in the United Kingdom and centered on the prevalence of CVD by ethnicity, age and sex. An important sub-theme identified was the disparities in health service utilization/hospital admission. Coronary Heart Disease (CHD) and Peripheral Arterial Disease (PAD) were less prevalent among Afro-Caribbeans compared to Caucasian and South East Asian ethnic groups. The prevalence of CHD ranged from 0-7% in Afro-Caribbean to 2-22% in Caucasians. Strokes were more common among Afro-Caribbeans. There are inadequate data on morbidity and mortality from CVD, particularly across the socio-economic gradient, in Afro-Caribbean populations. CONCLUSIONS: There are important differences in morbidity and mortality from CVD across ethnic groups. Important knowledge gaps remain in understanding the social determinants of these disparities in CVD. More research exploring these gaps by varying disparity indicators needs to be undertaken.

Oral protein calorie supplementation for children with chronic disease.

BACKGROUND: Poor growth and nutritional status are common in children with chronic diseases. Oral protein calorie supplements are used to improve nutritional status in these children. These expensive products may be associated with some adverse effects, e.g. the development of inappropriate eating behaviour patterns. This is a new update of a Cochrane review last updated in 2009. OBJECTIVES: To examine evidence that in children with chronic disease, oral protein calorie supplements alter daily nutrient intake, nutritional indices, survival and quality of life and are associated with adverse effects, e.g. diarrhoea, vomiting, reduced appetite, glucose intolerance, bloating and eating behaviour problems. SEARCH METHODS: Trials of oral protein calorie supplements in children with chronic diseases were identified through comprehensive electronic database searches, handsearching relevant journals and abstract books of conference proceedings. Companies marketing these products were also contacted.Most recent search of the Group's Trials Register: 24 February 2015. SELECTION CRITERIA: Randomised or quasi-randomised controlled trials comparing oral protein calorie supplements for at least one month to increase calorie intake with existing conventional therapy (including advice on improving nutritional intake from food or no specific intervention) in children with chronic disease. DATA COLLECTION AND ANALYSIS: We independently assessed the outcomes: indices of nutrition and growth; anthropometric measures of body composition; calorie and nutrient intake (total from oral protein calorie supplements and food); eating behaviour; compliance; quality of life; specific adverse effects; disease severity scores; and mortality; we also assessed the risk of bias in the included trials. MAIN RESULTS: Four studies (187 children) met the inclusion criteria. Three studies were carried out in children with cystic fibrosis and one study included children with paediatric malignant disease. Overall there was a low risk of bias for blinding and incomplete outcome data.Two studies had a high risk of bias for allocation concealment. Few statistical differences were found in the outcomes we assessed between treatment and control groups, except change in total energy intake at six and 12 months, mean difference 304.86 kcal per day (95% confidence interval 5.62 to 604.10) and mean difference 265.70 kcal per day (95% confidence interval 42.94 to 485.46), respectively. However, these were based on the analysis of just 58 children in only one study. Only two chronic diseases were included in these analyses, cystic fibrosis and paediatric malignant disease. No other studies were identified which assessed the effectiveness of oral protein calorie supplements in children with other chronic diseases. AUTHORS' CONCLUSIONS: Oral protein calorie supplements are widely used to improve the nutritional status of children with a number of chronic diseases. We identified a small number of studies assessing these products in children with cystic fibrosis and paediatric malignant disease, but were unable to draw any conclusions based on the limited data extracted. We recommend a series of large, randomised controlled trials be undertaken investigating the use of these products in children with different chronic diseases. Until further data are available, we suggest these products are used with caution.

Associations between neighborhood effects and physical activity, obesity, and diabetes: The Jamaica Health and Lifestyle Survey 2008.

OBJECTIVE: To examine the impact of neighborhood disorder, perceived neighborhood safety, and availability of recreational facilities on prevalence of physical activity (PA), obesity, and diabetes mellitus (DM). STUDY DESIGN AND SETTING: Multilevel analyses were conducted among 2,848 respondents from the 2007-08 Jamaica Health and Lifestyle Survey. Neighborhood effects were based on aggregated interviewer responses to systematic social observation questions. Mixed-effect logistic regression models were created to assess the relationship between neighborhood indicators and DM and the modifiable risk factors PA and overweight/obesity. RESULTS: There was significant clustering in PA levels of 20 minutes at least once per week (intraclass correlation coefficient [ICC] = 10.7%), low/no PA (ICC = 7.22%), diabetes (ICC = 5.44%), and obesity (ICC = 3.33%) across neighborhoods. Greater levels of neighborhood disorder, home disorder, and counterintuitively recreational space availability were associated with higher levels of low/no PA among women. There was significant interaction by sex between neighborhood infrastructure and overweight/obesity with a significant association in men (odds ratio [OR] = 1.16; 95% confidence interval [CI] = 1.05, 1.28) but not women (OR = 1.01; 95% CI = 0.95, 1.07). CONCLUSION: Differences in PA and obesity-related outcomes among Jamaicans may be partially explained by characteristics of the neighborhood environment and differ by sex. Future studies must be conducted to determine the mechanistic pathways through which the neighborhood environment may impact such outcomes to better inform prevention efforts.

Disparities in diabetes mellitus among Caribbean populations: a scoping review.

BACKGROUND: Despite the large body of research on racial/ethnic disparities in health, there are limited data on health disparities in Caribbean origin populations. This review aims to analyze and synthesize published literature on the disparities in diabetes mellitus (DM) and its complications among Afro-Caribbean populations. METHODS: A detailed protocol, including a comprehensive search strategy, was developed and used to identify potentially relevant studies. Identified studies were then screened for eligibility using pre-specified inclusion and exclusion criteria. An extraction form was developed to chart data and collate study characteristics including methods and main findings. Charted information was tagged by disparity indicators and thematic analysis performed. Disparity indicators evaluated include ethnicity, sex, age, socioeconomic status, disability and geographic location. Gaps in the literature were identified and extrapolated into a gap map. RESULTS: A total of 1009 diabetes related articles/manuscripts, published between 1972 and 2013, were identified and screened. Forty-three studies met inclusion criteria for detailed analysis. Most studies were conducted in the United Kingdom, Trinidad and Tobago and Jamaica, and used a cross-sectional study design. Overall, studies reported a higher prevalence of DM among Caribbean Blacks compared to West African Blacks and Caucasians but lower when compared to South Asian origin groups. Morbidity from diabetes-related complications was highest in persons with low socioeconomic status. Gap analysis showed limited research data reporting diabetes incidence by sex and socioeconomic status. No published literature was found on disability status or sexual orientation as it relates to diabetes burden or complications. Prevalence and morbidity were the most frequently reported outcomes. CONCLUSION: Literature on diabetes health disparities in Caribbean origin populations is limited. Future research should address these knowledge gaps and develop approaches to reduce them.

WHO/ISH total risk approach for primary prevention of cardiovascular disease shows greater decrease in costs for women but not the elderly in Jamaica.

OBJECTIVES: To investigate cost savings from and implications of replacing the single risk with a total cardiovascular risk approach in primary prevention of cardiovascular disease (CVD). STUDY DESIGN AND SETTING: A cost analysis using data from the 2007-08 Jamaica Health and Lifestyle Survey of 1,432 persons aged 40 years and older with 10-year risk estimated from region-specific World Health Organization/International Society for Hypertension (WHO/ISH) CVD risk charts. The WHO/ISH and local treatment guidelines were used to cost lifestyle changes, medications, and provider visits. RESULTS: Use of the total cardiovascular risk approach was less costly regardless of age. Women showed greater cost disparity. However, if 10-year CVD risk was estimated without measured cholesterol, both approaches resulted in similar costs in men ≥60 years. The annual per capita cost of lifestyle recommendations, critical in the absence of pharmacotherapy, was estimated at US $869.05 for diet and US $80 for physical activity. This represents about a third of the annual income of a minimum wage earner. At the national level, implementation of the WHO/ISH total risk approach could reduce health care costs by US $5 million annually. CONCLUSION: Cost savings that mainly resulted from reduced care for women may lead to gender disparity in CVD outcomes.

Ethics and equity in research priority-setting: stakeholder engagement and the needs of disadvantaged groups.

A transparent and evidence-based priority-setting process promotes the optimal use of resources to improve health outcomes. Decision-makers and funders have begun to increasingly engage representatives of patients and healthcare consumers to ensure that research becomes more relevant. However, disadvantaged groups and their needs may not be integrated into the priority-setting process since they do not have a "political voice" or are unable to organise into interest groups. Equitable priority-setting methods need to balance patient needs, values, experiences with population-level issues and issues related to the health system.