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1.  The Cultural Validation of Two Scales to Assess Social Stigma in Leprosy 
Stigma plays in an important role in the lives of persons affected by neglected tropical diseases, and assessment of stigma is important to document this. The aim of this study is to test the cross-cultural validity of the Community Stigma Scale (EMIC-CSS) and the Social Distance Scale (SDS) in the field of leprosy in Cirebon District, Indonesia.
Methodology/principle findings
Cultural equivalence was tested by assessing the conceptual, item, semantic, operational and measurement equivalence of these instruments. A qualitative exploratory study was conducted to increase our understanding of the concept of stigma in Cirebon District. A process of translation, discussions, trainings and a pilot study followed. A sample of 259 community members was selected through convenience sampling and 67 repeated measures were obtained to assess the psychometric measurement properties. The aspects and items in the SDS and EMIC-CSS seem equally relevant and important in the target culture. The response scales were adapted to ensure that meaning is transferred accurately and no changes to the scale format (e.g. lay out, statements or questions) of both scales were made. A positive correlation was found between the EMIC-CSS and the SDS total scores (r = 0.41). Cronbach's alphas of 0.83 and 0.87 were found for the EMIC-CSS and SDS. The exploratory factor analysis indicated for both scales an adequate fit as unidimensional scale. A standard error of measurement of 2.38 was found in the EMIC-CSS and of 1.78 in the SDS. The test-retest reliability coefficient was respectively, 0.84 and 0.75. No floor or ceiling effects were found.
According to current international standards, our findings indicate that the EMIC-CSS and the SDS have adequate cultural validity to assess social stigma in leprosy in the Bahasa Indonesia-speaking population of Cirebon District. We believe the scales can be further improved, for instance, by adding, changing and rephrasing certain items. Finally, we provide suggestions for use with other neglected tropical diseases.
Author Summary
Persons affected by neglected tropical diseases, such as, Buruli ulcer, lymphatic filariasis, onchocerciasis, leishmaniasis and leprosy, can experience stigma. One important source of stigma are members in the community. Neighbours, religious leaders, and community leaders can exclude, reject, blame or devalue a person affected by one of these diseases. It is important to be able to assess this type of stigma for the prevention and management of these diseases. Assessing stigma is not an easy task. There are several instruments available, but these were developed with different aims or tested in different settings. We can use these instruments, but we need to be sure that they assess what we want them to assess and whether the instrument produces consistent results. In this paper the authors report a study that investigated the validity of two scales that assess stigma in the community towards people affected by leprosy in Indonesia. The names of the scales are Explanatory Model Interview Catalogue Community Stigma Scale (EMIC-CSS) and Social Distance Scale (SDS). The results show the two scales to be adequately valid and reliable in the target culture. There are, however, also several improvements possible and the authors provide suggestions how to incorporate these. In addition, the authors provide recommendations for the use of these scales among people affected by other neglected tropical diseases.
PMCID: PMC4222778  PMID: 25376007
2.  Contextualization of HIV and HPV risk and prevention among Pacific Islander young adults in Southern California 
Social science & medicine (1982)  2012;75(4):699-708.
HIV and sexually transmitted human papillomavirus (HPV) are associated with each other and with the development of comorbid cancer. Current epidemiology indicates that among Pacific Islanders in the United States, young adults are at highest risk of HIV and HPV. In our inductive community based participatory research study, we used focus groups and key informant interviews (March – August 2010) with young adults, parents, community leaders, and providers (n = 95) to identify and contextualize factors that shape HIV and HPV risk and prevention among young adults in Chamorro and Tongan communities in Southern California. We identified nine themes that incorporated the following principal factors: misinformation and otherization; dominant concerns regarding premarital pregnancy; restricted intergenerational communication; family shame and privacy; gendered manifestations of religio-cultural norms; barriers impeding access to sexual health resources; parents’ role in prevention; community vs. individual responsibility; and family and ethnic pride. Our thematic findings fit well with Rhodes’ “risk and enabling environment” heuristic (2009), which we used to contextualize risk and prevention at micro and macro levels of physical, social, economic, and policy environments. We propose the addition of a separate cultural environment to the heuristic and conclude that a focus on applying individual and community agency at the micro-level would be an approachable starting point for intervention for our local Pacific Islander communities and groups in similar ecological contexts globally. Enhanced community-led education programs and engagement of religious and other community leaders to facilitate intergenerational communication could counteract taboos that obstruct prevention.
PMCID: PMC3383406  PMID: 22647562
USA; HIV; Human papillomavirus (HPV); Pacific Islanders; Tongan; Chamorro; Young adults; Community Based Participatory Research; gender
3.  A Community - Based Participatory Research Study of HIV and HPV Vulnerabilities and Prevention in Two Pacific Islander Communities: Ethical Challenges and Solutions 
We describe ethical issues that emerged during a one-year CBPR study of HIV and human papillomavirus (HPV) vulnerabilities and prevention in two Pacific Islander (PI) communities, and the collaborative solutions to these challenges reached by academic and community partners. In our project case study analysis, we found that ethical tensions were linked mainly to issues of mutual trust and credibility in PI communities; cultural taboos associated with the nexus of religiosity and traditional PI culture; fears of privacy breaches in small, interconnected PI communities; and competing priorities of scientific rigor versus direct community services. Mutual capacity building and linking CBPR practice to PI social protocols are required for effective solutions and progress toward social justice outcomes.
PMCID: PMC3691962  PMID: 23485672
HIV; human papillomavirus (HPV); Pacific Islanders; Chamorro; Tongan; research ethics; community-based participatory research; social justice
4.  The Meaning of Leprosy and Everyday Experiences: An Exploration in Cirebon, Indonesia 
Journal of Tropical Medicine  2013;2013:507034.
It is imperative to consider the meaning of leprosy and everyday experiences of people affected by leprosy and key persons in the community if one aims to make leprosy services more effective, which appears necessary in Indonesia given the large numbers of new cases detected annually. However, little is written in the international literature about the experiences of people currently being treated for leprosy, those cured, or other key informants. This paper analyses the narratives of the people by drawing upon in-depth interviews with 53 participants and 20 focus groups discussions. The participants were purposively selected. We provide insights into the experiences of people and the meaning they give to leprosy and highlight aspect of aetiology, spirituality, religion, darkening of the skin, and sorcery. We also examine experiences of seeking care and focused on the impact of the disease in particular on the elderly and children. In conclusion, the continued need for implementation of leprosy services in Indonesia is very evident. The diversities in people's experiences with leprosy indicate a demand for responsive leprosy services to serve the diverse needs, including services for those formally declared to be “cured.”
PMCID: PMC3615632  PMID: 23577037
5.  Latest Advances on Interventions that May Prevent, Delay or Ameliorate Dementia 
In this paper we aim to: (1) identify and review midlife risk factors that may contribute to the development of dementia and that may be amenable to intervention; (2) review advances made in our understanding of the most common cause of dementia, Alzheimer's disease (AD), where current pharmacological studies have aimed to modify the disease course; and (3) explore other interventions that may slow cognitive decline in those with AD.
A review of the literature was conducted to look for interventions that may modify the risk of incident dementia or that may modify symptom progression in those with diagnosed dementia.
(1) Midlife risks identified as amenable to intervention include blood pressure, diabetes, elevated cholesterol, poor psychosocial and lifestyle factors. (2) The leading drugs in development can be grouped by their principal target: anti-amyloid, anti-tau and mitochondrial stability. However to date, there have been no successes in late stage Phase III trials of putative disease-modifying drugs for AD. (3) Once the diagnosis of dementia has been made there is little that can slow the rate of decline. Possible exceptions include the use of exercise and antihypertensive medication with some nootropic medication showing promise in small trials.
(1) It is clear that there are several risk factors in midlife that may lead to a greater likelihood of developing dementia. However, there is no simple intervention to modify these risks. It seems sensible to conclude from the data that avoiding high blood pressure, controlling cholesterol and diabetes as well as maintaining a healthy diet and lifestyle may lower the risk of developing dementia. (2) The need for better outcome measures in clinical trials is evident and may, in part, explain the numerous failures in late-stage clinical trials of disease-modifying drugs. Improved diagnostic test batteries to reduce population heterogeneity in early intervention studies will be required for robust clinical trials in the future. (3) Current research indicates that there is little that can delay decline; however, future trials may wish to focus on nootropics.
PMCID: PMC3513883  PMID: 23251748
ageing; Alzheimer's disease; delay; dementia; cognitive decline; prevent; risk factors
6.  Modelling Cognitive Decline in the Hypertension in the Very Elderly Trial [HYVET] and Proposed Risk Tables for Population Use 
PLoS ONE  2010;5(7):e11775.
Although, on average, cognition declines with age, cognition in older adults is a dynamic process. Hypertension is associated with greater decline in cognition with age, but whether treatment of hypertension affects this is uncertain. Here, we modelled dynamics of cognition in relation to the treatment of hypertension, to see if treatment effects might better be discerned by a model that included baseline measures of cognition and consequent mortality
Methodology/Principal Findings
This is a secondary analysis of the Hypertension in the Very Elderly Trial (HYVET), a double blind, placebo controlled trial of indapamide, with or without perindopril, in people aged 80+ years at enrollment. Cognitive states were defined in relation to errors on the Mini-Mental State Examination, with more errors signifying worse cognition. Change in cognitive state was evaluated using a dynamic model of cognitive transition. In the model, the probabilities of transitions between cognitive states is represented by a Poisson distribution, with the Poisson mean dependent on the baseline cognitive state.
The dynamic model of cognitive transition was good (R2 = 0.74) both for those on placebo and (0.86) for those on active treatment. The probability of maintaining cognitive function, based on baseline function, was slightly higher in the actively treated group (e.g., for those with the fewest baseline errors, the chance of staying in that state was 63% for those on treatment, compared with 60% for those on placebo). Outcomes at two and four years could be predicted based on the initial state and treatment.
A dynamic model of cognition that allows all outcomes (cognitive worsening, stability improvement or death) to be categorized simultaneously detected small but consistent differences between treatment and control groups (in favour of treatment) amongst very elderly people treated for hypertension. The model showed good fit, and suggests that most change in cognition in very elderly people is small, and depends on their baseline state and on treatment. Additional work is needed to understand whether this modelling approach is well suited to the valuation of small effects, especially in the face of mortality differences between treatment groups.
Trial Registration NCT0012281
PMCID: PMC2909901  PMID: 20668673
7.  Effect of Pioglitazone on Progression of Subclinical Atherosclerosis in Non-Diabetic Premenopausal Hispanic Women with Prior Gestational Diabetes 
Atherosclerosis  2007;199(1):207-214.
The Pioglitazone in the Prevention of Diabetes (PIPOD) study was a single arm 3-year open-label pioglitazone treatment to determine the effects of pioglitazone in women with prior gestational diabetes mellitus (GDM) who had completed the Troglitazone in the Prevention of Diabetes (TRIPOD) study. Here we report the results on progression of subclinical atherosclerosis, measured by carotid intima-media thickness (CIMT) in non-diabetic women. Data were analyzed to compare CIMT progression rates during pioglitazone treatment to rates that had been observed during either placebo or troglitazone treatment in the TRIPOD study. Sixty-one women met the entry criteria with mean age of 40 years. In the 30 women who came to PIPOD from the placebo arm of TRIPOD, the CIMT rate was 69% lower during pioglitazone treatment than it had been during placebo (0.0031 vs. 0.0100 mm/yr, p=0.006). In the 31 women who came to PIPOD from the troglitazone arm of TRIPOD, CIMT rate was 38% lower during pioglitazone than it had been during troglitazone, a difference that was not statistically significant (0.0037 vs. 0.0060 mm/year; p=0.26). Adjustment for differences in baseline characteristics and potential on-trial confounders did not alter the conclusion but did increase the CIMT rates differences slightly. We conclude that treatment with pioglitazone slowed CIMT progression in women who had been on placebo in the TRIPOD study and maintained a relatively low rate of progression in women who had been on troglitazone. Pioglitazone slows progression of subclinical atherosclerosis in young Hispanic women at increased risk for type 2 diabetes.
PMCID: PMC2493568  PMID: 18054942
Pioglitazone; intima-media thickness; premenopausal; gestational diabetes; atherosclerosis
8.  Smoking, dementia and cognitive decline in the elderly, a systematic review 
BMC Geriatrics  2008;8:36.
Nicotine may aid reaction time, learning and memory, but smoking increases cardiovascular risk. Cardiovascular risk factors have been linked to increased risk of dementia. A previous meta-analysis found that current smokers were at higher risk of subsequent dementia, Alzheimer's disease, vascular dementia and cognitive decline.
In order to update and examine this further a systematic review and meta-analysis was carried out using different search and inclusion criteria, database selection and more recent publications. Both reviews were restricted to those aged 65 and over.
The review reported here found a significantly increased risk of Alzheimer's disease with current smoking and a likely but not significantly increased risk of vascular dementia, dementia unspecified and cognitive decline. Neither review found clear relationships with former smoking.
Current smoking increases risk of Alzheimer's disease and may increase risk of other dementias. This reinforces need for smoking cessation, particularly aged 65 and over. Nicotine alone needs further investigation.
PMCID: PMC2642819  PMID: 19105840
9.  Haemoglobin, anaemia, dementia and cognitive decline in the elderly, a systematic review 
BMC Geriatrics  2008;8:18.
Anaemia may increase risk of dementia or cognitive decline. There is also evidence that high haemoglobin levels increase risk of stroke, and consequently possible cognitive impairment. The elderly are more at risk of developing dementia and are also more likely to suffer from anaemia, although there is relatively little longitudinal literature addressing this association.
To evaluate the evidence for any relationship between incident cognitive decline or dementia in the elderly and anaemia or haemoglobin level, we conducted a systematic review and meta-analyses of peer reviewed publications. Medline, Embase and PsychInfo were searched for English language publications between 1996 and 2006. Criteria for inclusion were longitudinal studies of subjects aged ≥65, with primary outcomes of incident dementia or cognitive decline. Other designs were excluded.
Three papers were identified and only two were able to be combined into a meta-analysis. The pooled hazard ratio for these two studies was 1.94 (95 percent confidence intervals of 1.32–2.87) showing a significantly increased risk of incident dementia with anaemia. It was not possible to investigate the effect of higher levels of haemoglobin.
Anaemia is one factor to bear in mind when evaluating risk of incident dementia. However, there are few data available and the studies were methodologically varied so a cautionary note needs to be sounded and our primary recommendation is that further robust research be carried out.
PMCID: PMC2529275  PMID: 18691409
10.  Effect of Pioglitazone on Pancreatic β-Cell Function and Diabetes Risk in Hispanic Women With Prior Gestational Diabetes 
Diabetes  2006;55(2):517-522.
The Pioglitazone In Prevention Of Diabetes (PIPOD) study was conducted to evaluate β-cell function, insulin resistance, and the incidence of diabetes during treatment with pioglitazone in Hispanic women with prior gestational diabetes who had completed participation in the Troglitazone In Prevention Of Diabetes (TRIPOD) study. Women who completed the TRIPOD study were offered participation in the PIPOD study for a planned 3 years of drug treatment and 6 months of postdrug washout. Oral glucose tolerance tests were performed annually on pioglitazone and at the end of the postdrug washout. Intravenous glucose tolerance tests (IVGTTs) for assessment of insulin sensitivity and β-cell function were conducted at baseline, after 1 year on pioglitazone, and at the end of the postdrug washout. Of 95 women who were not diabetic at the end of the TRIPOD study, 89 enrolled in the PIPOD study, 86 completed at least one follow-up visit, and 65 completed all study visits, including the postdrug tests. Comparison of changes in β-cell compensation for insulin resistance across the TRIPOD and PIPOD studies revealed that pioglitazone stopped the decline in β-cell function that occurred during placebo treatment in the TRIPOD study and maintained the stability of β-cell function that had occurred during troglitazone treatment in the TRIPOD study. The risk of diabetes, which occurred at an average rate of 4.6% per year, was lowest in women with the largest reduction in total IVGTT insulin area after 1 year of treatment. The similarity of findings between the PIPOD and TRIPOD studies support a class effect of thiazolidinedione drugs to enhance insulin sensitivity, reduce insulin secretory demands, and preserve pancreatic β-cell function, all in association with a relatively low rate of type 2 diabetes, in Hispanic women with prior gestational diabetes.
PMCID: PMC1389697  PMID: 16443789
11.  Fracture risk and the use of a diuretic (indapamide sr) ± perindopril: a substudy of the Hypertension in the Very Elderly Trial (HYVET) 
Trials  2006;7:33.
The Hypertension in the Very Elderly Trial (HYVET) is a placebo controlled double blind trial of treating hypertension with indapamide Slow Release (SR) ± perindopril in subjects over the age of 80 years. The primary endpoints are stroke (fatal and non fatal). In view of the fact that thiazide diuretics and indapamide reduce urinary calcium and may increase bone mineral density, a fracture sub study was designed to investigate whether or not the trial anti-hypertensive treatment will reduce the fracture rate in very elderly hypertensive subjects.
In the trial considerable care is taken to ascertain any fractures and to identify risk factors for fracture, such as falls, co-morbidity, drug treatment, smoking and drinking habits, levels of activity, biochemical abnormalities, cardiac irregularities, impaired cognitive function and symptoms of orthostatic hypotension.
Potential results
The trial is expected to provide 10,500 patient years of follow-up. Given a fracture rate of 40/1000 patient years and a 20% difference in fracture rate, the power of the sub study is 58% to detect this difference at the 5% level of significance. The corresponding power for a reduction of 25% is 78%.
The trial is well under way, expected to complete in 2009, and on target to detect, if present, the above differences in fracture rate.
PMCID: PMC1769508  PMID: 17177983

Results 1-11 (11)