The Eastern Caribbean Health Outcomes Research Network (ECHORN) Cohort Study: Design, Methods, and Baseline Characteristics.

Noncommunicable diseases (NCDs) account for a higher proportion of mortality and morbidity in the Caribbean and US territories-majority-minority communities-than in the United States or Canada. Strategies to address this disparity include enhancing data collection efforts among racial/ethnic communities. The ECHORN Cohort Study (ECS), a regional adult cohort study, estimates prevalence and assesses risk factors for NCDs in two United States territories and two Caribbean islands. Here, we describe the cohort study approach, sampling methods, data components, and demographic makeup for wave one participants. We enrolled ECS participants from each participating island using random and probability sampling frames. Data components include a clinical examination, laboratory tests, a brief clinical questionnaire, and a self-administered health survey. A subset of ECS participants provided a blood sample to biobank for future studies. Approximately 2961 participants were enrolled in wave one of the ECS. On average, participants are 57 years of age, and the majority self-identify as female. Data from the ECS allow for comparisons of NCD outcomes among racial/ethnic populations in the US territories and the US and evaluations of the impact of COVID-19 on NCD management and will help highlight opportunities for new research.

The Role of Research in Policy and Practice: The Zika Phenomena in Puerto Rico.

On April 19, 2017, the 37th Medical Sciences Campus Annual Research and Education Forum opened with the discussion panel The role of research in policy and practice: The Zika phenomena in Puerto Rico, with Dr. Cruz M. Nazario Delgado, Dr. Carmen D. Zorrilla and Dr. Luis A. Bonilla Soto. In this article, we critically examine the public policy process of the Zika epidemic in Puerto Rico, as presented by authors Nazario and Bonilla. We argue that policymaking and the public health responses to confront the Zika epidemic in Puerto Rico took place in a political environment where different US and local actors operated to advance their goals and vision, undermining the role of knowledge, evidence and past experiences. We propose a bottom to top preventive and community empowerment approach to control the vector. This model must be built on successful policy implementation experiences with epidemics in the Island and strengthened by evidence, international guidelines and ethical principles.

Differential and persistent risk of excess mortality from Hurricane Maria in Puerto Rico: a time-series analysis.

BACKGROUND: Hurricane Maria struck Puerto Rico on Sept 20, 2017, devastating the island. Controversy surrounded the official death toll, fuelled by estimates of excess mortality from academics and investigative journalists. We analysed all-cause excess mortality following the storm. METHODS: We did a time-series analysis in Puerto Rico from September, 2017, to February, 2018. Mortality data were from the Puerto Rico Vital Statistics System. We developed two counterfactual scenarios to establish the population at risk. In the first scenario, the island's population was assumed to track the most recent census estimates. In the second scenario, we accounted for the large-scale population displacement. Expected mortality was projected for each scenario through over-dispersed log-linear regression from July, 2010, to August, 2017, taking into account changing distributions of age, sex, and municipal socioeconomic development, as well as both long-term and seasonal trends in mortality. Excess mortality was calculated as the difference between observed and expected deaths. FINDINGS: Between September, 2017, and February, 2018, we estimated that 1191 excess deaths (95% CI 836-1544) occurred under the census scenario. Under the preferred displacement scenario, we estimated that 2975 excess deaths (95% CI 2658-3290) occurred during the same observation period. The ratio of observed to expected mortality was highest for individuals living in municipalities with the lowest socioeconomic development (1·43, 95% CI 1·39-1·46), and for men aged 65 years or older (1·33, 95% CI 1·30-1·37). Excess risk persisted in these groups throughout the observation period. INTERPRETATION: Analysis of all-cause mortality with vital registration data allows for unbiased estimation of the impact of disasters associated with natural hazards and is useful for public health surveillance. It does not depend on certified cause of death, the basis for the official death toll in Puerto Rico. Although all sectors of Puerto Rican society were affected, recovery varied by municipal socioeconomic development and age groups. This finding calls for equitable disaster preparedness and response to protect vulnerable populations in disasters. FUNDING: Forensic Science Bureau, Department of Public Safety, and Milken Institute School of Public Health of The George Washington University (Washington, DC, USA).

Foods Contributing to Macronutrient Intake of Women Living in Puerto Rico Reflect Both Traditional Puerto Rican and Western-Type Diets.

Lack of variability in dietary intake within a population makes identification of relationships between diet and disease difficult. Studies in populations with greater interindividual variation can provide important insights. The Puerto Rican diet is in transition from a traditional to a more Western-type diet, resulting in greater interindividual variability. We identified foods contributing to absolute intake and variability in the intake of macronutrients among Puerto Rican women. One hundred women, aged 30⁻79, residents of San Juan, Puerto Rico, completed three, interviewer-administered, 24-h dietary recalls from which foods contributing to absolute intake and intake variability in intake of energy, fat, protein, carbohydrate and dietary fiber were determined. The overall prevalence of intake of foods was also calculated. Traditional Puerto Rican foods such as legumes, rice, and plantains were important contributors to the intake of calories and macronutrients as were foods more typical of Western diets including white bread and sweetened carbonated beverages. Identification of food sources of nutrients for this population with a diet in transition can contribute to the development of instruments to measure dietary intake and to understand the contribution of diet to the etiology of chronic disease among Puerto Rican women.

Identifying clinical and support service resources and network practices for cancer patients and survivors in southern Puerto Rico.

OBJECTIVE: The objectives of this study were to identify cancer-related health care services and to explore the presence of inter-organizational interactions among clinical and support oncology services in southern Puerto Rico. METHODS: From January through July of 2010, a survey was completed by 54 health care organizations offering clinical, supportive, or both services to cancer patients/survivors (CPS) in southern PR. Survey data were compiled and descriptive analyses performed using the software Statistical Package for a Social Science (SPSS), version 18.0. RESULTS: The distribution of the primary services provided by the participating organizations was the following: 26 had clinical services, 16 had support services, and 12 offered a combination of clinical and support services. Only 24 % of the surveyed organizations offered their services exclusively to patients diagnosed with cancer. In terms of referral practices, 61 % of the responses were for medical specialists, 43 % were for mental health services, and 37 % were referrals for primary care services. The most common reason for interacting (n = 27) was to provide a given patient both a referral and information. CONCLUSION: Findings suggest gaps in both the availability of oncology services and the delivery of integrated health care. Lack of communication among clinical and support organizations (for cancer patients, specifically) could negatively impact the quality of the services that they offer. Further network analysis studies are needed to confirm these gaps. Until systemic, structural changes occur, more efforts are needed to facilitate communication and collaboration among these kinds of organization.

MSH-2 and MLH-1 protein expression in Muir Torre syndrome-related and sporadic sebaceous neoplasms.

BACKGROUND: Muir-Torre Syndrome (MTS) is a rare autosomal-dominant disorder characterized by the predisposition to both sebaceous neoplasm and internal malignancies. MTS-associated sebaceous neoplasms reveal mutations in DNA mismatch repair (MMR) genes and microsatellite instability. A significant part of MTS patients represents a phenotypic variant, the hereditary nonpolyposis colorectal cancer (HNPCC). A strong correlation between microsatellite instability and immunostaining has been demonstrated. The early recognition of sebaceous neoplasm as part of MTS, and their differentiation from sporadic sebaceous neoplasm may have an important application in a clinical setting. The absence of MLH-1 or MSH-2 expression by immunostaining identifies tumors with mismatch repair deficiency. OBJECTIVES: Our aim is to determine whether an immunohistochemical approach, targeting DNA repair proteins MSH-2 and MLH-1 in MTS-related sebaceous neoplasm and their sporadic counterparts, can be used for their identification. METHODS: We examined 15 sebaceous neoplasms (including 6 internal malignancy- associated sebaceous neoplasms and 8 sporadic sebaceous neoplasms) from 11 patients for the expression of MSH-2 and MLH-1 by immunohistochemistry. RESULTS: Four of 5 internal malignancy-associated sebaceous neoplasms showed loss of expression of MSH-2 or MLH-1. Correlation of the immunostaining pattern of the sebaceous neoplasms and the patients' positive history of colon carcinoma was 80%. Seven of 8 sporadic sebaceous neoplasms showed a positive expression of MSH-2 and MLH-1. The prevalence for loss of expression of MMR proteins in sebaceous neoplasms was 38.5%. MMR immunostaining had 87.5% specificity and 80% sensitivity. LIMITATIONS: This study is limited by a small sample size, and by bias selection due to the use of non nationwide data-base as the resource of cases. CONCLUSIONS: Our findings demonstrate that immunohistochemical testing for internal malignancy-associated sebaceous neoplasms is a practical approach to confirm a suspected inherited MMR gene defect, and an accurate method to distinguish between sporadic and MTS-associated sebaceous lesions.

Cancer of the larynx in Puerto Rico.

INTRODUCTION: Cancer of the larynx is the fourteenth most common cancer in the world. The purpose of this cross-sectional study is to examine the characteristics of laryngeal cancer in Puerto Rico. The study evaluates whether this type of cancer is increasing, to what degree gender differences occur; and describe common types of medical treatment. METHOD: Information on cases of laryngeal cancer for the period of 1997 to 2002 was collected at the Puerto Rico Central Cancer Registry, Department of Health. The incidence of laryngeal cancer in Puerto Rico during the study period was estimated. Sex differences in case-fatality rate and other variables were analyzed. Medical treatments for laryngeal cancer were also analyzed. RESULTS: The study revealed that the average incidence of laryngeal cancer in Puerto Rico was 3.8 x 100,000 from 1997-1998 and 3.5 x 100,000 from 2001-2002 (-1.07 APC). Of all the cases (n = 848) of laryngeal cancer reviewed, 88% were male. Females were more likely to be diagnosed before age 50 than males (p = 0.02). In this study, women had twice the probability of being alive at the end of the study period (OR = 1.97; CI: 1.14-3.45). The two most frequent types of single treatments for laryngeal cancer were radiation (39%) and surgery (33%). CONCLUSIONS: Cases oflaryngeal cancer are decreasing in Puerto Rico. Significant differences by sex were observed, especially the stage of the disease at the time of diagnosis. Future studies on medical treatment modalities that better preserve vocal function concurrently with voice therapy are recommended.

Self-reported physical activity in Hispanic adults living with HIV: comparison with accelerometer and pedometer.

Limited information is available regarding physical activity (PA) and its assessment in Hispanics living with HIV. This study compared self-reported PA using the International Physical Activity Questionnaire (IPAQ) with objectively measured PA using the ActiGraph accelerometer and DigiWalker pedometer in 58 Hispanic adults with HIV. IPAQ was administered before and after a 7-day period in which subjects wore the ActiGraph and DigiWalker. PA classification was based on > or = 150 min/wk (IPAQ, ActiGraph) and > or = 10,000 steps/day (DigiWalker). IPAQ-PA was higher than ActiGraph-PA (423 +/- 298 vs. 165 +/- 134 min/wk, respectively) (p < .01). There was a mismatch in PA classification with the IPAQ, ActiGraph, and DigiWalker (active = 81%, 54%, and 17%, respectively). Hispanics with HIV highly overestimated self-reported PA. Nurse scientists and other investigators must consider accelerometers or pedometers to assess PA in this population.

Prevalence of spondyloarthropathy in Puerto Rican patients with inflammatory bowel disease.

INTRODUCTION: Inflammatory arthritis is the most common extraintestinal manifestation in patients with inflammatory bowel disease (IBD). Approximately 20% of all IBD patients will present with peripheral arthritis, sacroiliitis, or spondylitis. The purpose of this study was to determine the prevalence of spondyloarthropathy and sacroiliitis in Puerto Rican patients with IBD. METHODS: Patients were obtained from the IBD specialty clinic and all had a diagnosis of ulcerative colitis or Crohn's disease. All the patients who agreed to participate were entered in the study. Patients completed a questionnaire and underwent a physical examination. Radiologic examination of the lumbosacral spine and sacroiliac joints was performed. Blood samples were obtained for determining human leukocyte antigen class I and were serologically analyzed in the pathology department laboratory. Data were analyzed by using SPSS 10.0 for Windows. RESULTS: One hundred patients were enrolled; 57% had ulcerative colitis, and 43% had Crohn's disease. Fifty percent were female, and the mean age was 37 years (standard deviation 14.96 years). Seventy-seven percent reported history of joint pain, and 47% reported limitation due to joint pain. Physical examination revealed peripheral synovitis in five patients and spinal tenderness in 46 patients. Of the 100 patients, 42 had inflammatory back pain and fulfilled the criteria for spondyloarthropathy. Radiographs were obtained in 76 patients. They revealed grade 2 or greater sacroiliitis in 10 patients (13%) and ankylosing spondylitis in two patients (2.6%). Of the 82 patients with blood samples, human leukocyte antigen B27 was found in five patients (6%). CONCLUSIONS: Of the study population of Puerto Ricans with IBD, 42% had spondyloarthropathy. This prevalence is higher than reported in Caucasians (20%-30%). Sacroiliitis had a similar prevalence as reported in Caucasians, but the prevalence of peripheral arthritis was much lower.

Major histocompatibility complex class II polymorphisms and risk of cervical cancer in Puerto Rican women.

Association between HLA antigens and cervical squamous cell carcinoma has been described in several populations. To verify whether HLA-DRB1 and DQB1 diversity is related to cervical cancer in Puerto Rican women, 40 cases and 50 controls were HLA typed. DRB1*16 (POR=2.89) and DRB1*11 (POR=1.74) were positively associated with cervical cancer. A negative association was found with DRB1*01 (POR=0.52), DRB1*04 (POR=0.60), DRB1*14 (POR=0.33), DRB1*15 (POR=0.65), DQB1*04 (POR=0.33), DQB1*05 (POR=0.64) and DQB1*06 (POR=0.65). We suggest that HLA Class H polymorphisms are involved in genetic susceptibility to cervical cancer in Puerto Rican women. These results should be confirmed in studies with larger sample size to preclude the possibility of false positive observations.

The prevalence of atopic dermatitis in Puerto Rican school children.

BACKGROUND: Atopic dermatitis is a common inflammatory disease of the skin that usually begins in childhood and its diagnosis depends on clinical criteria. Recent reports have indicated that the worldwide prevalence of atopic dermatitis is increasing. The objective of this study was to determine the prevalence of atopic dermatitis in schoolchildren between the ages of six and seven in two school districts in Puerto Rico. METHODS: The Laughter questionnaire, developed to determine the prevalence of atopic dermatitis in schoolchildren was translated and validated in Spanish. A population-based prevalence survey was conducted among second grade students in the districts of Guaynabo and Humacao, Puerto Rico. The prevalence of atopic dermatitis was determined by sex, school type (private or public), and geographical location (urban or rural) using the questionnaire. RESULTS: Ninety-two percent (92 %) of the eligible schools participated in the study. A total of 2,393 questionnaires were distributed with a response rate of 53 %. The prevalence of atopic dermatitis among the population surveyed was 24.8%. The prevalence of atopic dermatitis by sex or geographic location was not significantly different (p>0.05). An excess of atopic dermatitis was observed in private schools (31.0%) when compared to public schools (19.9%). The effect remained after controlling potential confounders (POR Mantel-Haenszel = 1.37; 95%CI: 1.07 - 1.42). CONCLUSION: This study presents evidence of a significant public health problem in Puerto Rico. The prevalence of atopic dermatitis in Puerto Rico is high and possibly a large percentage (70%) of the patients is not been diagnosed.

Adaptation of the Medical Research Council Dyspnea Scale and the Oxygen Cost Diagram for its use in Puerto Rico.

INTRODUCTION: Dyspnea is a common and disabling symptom for patients with chronic lung diseases. The Medical Research Council Dyspnea Scale (MRC) and the Oxygen Cost Diagram (OCD) are widely used instruments validated in English to measure breathlessness. OBJECTIVE: To translate and culturally adapt the MRC and the OCD for its use in Puerto Rico. METHOD: The scales were translated to Spanish and back translated. They were tested in patients attending a pulmonary clinic to assess its relevance and comprehension. Subjects answered the instruments, had a structured clinical interview and provided feedback. A multidisciplinary committee analyzed the source of misunderstanding using the input of the subjects, the clinical physicians, and the evaluators; made adjustments, and retested the instruments until inconsistencies were not observed. RESULTS: Placing emphasis on time spent walking instead of distance traveled improved the discrimination between grade two and three in the MRC. In the OCD, placing the activities to the right side eased the interpretation of the scale. Numerical symbols were eliminated to minimize discomfort in the severely impaired subjects reluctant to mark the line near zero. Reversing the order of both scales encouraged a thorough reading of the activities from minimal to high energy demanding eliciting a more fitting response compared to structured clinical interview especially in the severely ill patient. CONCLUSION: Using cross-cultural research methodologies to translate the MRC and OCD allowed the identification of differences in conceptualization when assessing the severity of dyspnea in Puerto Rico. Further testing is needed to confirm psychometric properties.

[Factors related with the use of screening mammogram in middle age women in Puerto Rico]. / Factores relacionados con el uso del mamograma de cernimiento en mujeres de edad mediana en Puerto Rico.

Mammography for low-income women is an important intervention issue as it is still under utilized in these sectors. Despite evidence in favor of breast cancer screening with mammograms, research indicates that mammogram compliance among low-income females and women over 50 years of age has been slow. This article revolves around the factors that affect compliance with screening mammograms among low-income women ages 40 to 64 in Puerto Rico once they receive a referral from a physician. Although the multivariate analysis demonstrated that only age, work outside of the home and performing breast self-exams significantly increased the probability for middle-aged, low-income women in Puerto Rico to comply with referrals and have mammograms, this research illustrated that certain factors such as knowledge about the disease and screening practices, a satisfactory perception of the patient-physician relationship, and the performance of a clinical breast exam by a physician influence mammogram compliance.

[Qualitative analysis on screening mammography compliance among middle-aged women in Puerto Rico]. / Análisis cualitativo sobre el cumplimiento con mamografía de cernimiento de mujeres de edad mediana en Puerto Rico.

Screening mammogram utilization is a critical issue in early detection of breast cancer. However, it is underutilized by different sectors, particularly low-income women. The objective of this study was to utilize the method known as focus group to probe into obstacles to screening mammogram among low-income women in the ages 40 to 64 in Puerto Rico once they had a physician's referral. The women in the study had knowledge of breast self-examination, clinical breast exam and mammogram as tests to detect breast cancer. Yet, they had no adequate knowledge about current screening guidelines. Attitudes toward pain or discomfort related to the mammogram and fear of a breast cancer diagnosis were the personal reasons most often cited for non-compliance in the focus group discussions. In the case of external or systemic barriers, the most prevalent reasons offered were: cost of the mammogram, transportation, and negative factors associated to the doctor-patient relationship.

Análisis cualitativo sobre el cumplimiento con mamografía de cernimiento de mujeres de edad mediana en Puerto Rico / Qualitative analysis on screening mammography compliance among middle-aged women in Puerto Rico

Screening mammogram utilization is a critical issue in early detection of breast cancer. However, it is underutilized by different sectors, particularly low-income women. The objective of this study was to utilize the method known as focus group to probe into obstacles to screening mammogram among low-income women in the ages 40 to 64 in Puerto Rico once they had a physician's referral. The women in the study had knowledge of breast self-examination, clinical breast exam and mammogram as tests to detect breast cancer. Yet, they had no adequate knowledge about current screening guidelines. Attitudes toward pain or discomfort related to the mammogram and fear of a breast cancer diagnosis were the personal reasons most often cited for non-compliance in the focus group discussions. In the case of external or systemic barriers, the most prevalent reasons offered were: cost of the mammogram, transportation, and negative factors associated to the doctor-patient relationship.

Breast cancer patterns and lifetime risk of developement breast cancer among Puerto Rican females

OBJECTIVES: The purpose of this study was to evaluate the epidemiologic patterns of breast cancer and to estimate the lifetime risk probability of developing breast cancer among Hispanic females using cancer data from Puerto Rico. BACKGROUND: The age-adjusted breast cancer incidence rate (per 100,000) in Puerto Rico increased from 15.3 in 1960-1964 to 43.3 in 1985-1989. The age-adjusted breast cancer mortality rate (per 100,000) increased from 5.7 to 10.6 comparing the same two time periods (1960-1964 vs 1985-1989). Nevertheless, in 1985-1989 breast cancer incidence rate was higher in US White females (110.8 per 100,000) compared to Puerto Rican females (51.4 per 100,000; age-adjusted to the 1970 US standard population). The breast cancer mortality rate was also higher in US White females (27.4 per 100,000) than in Puerto Rican females (15.1 per 100,000; age-adjusted to the 1970 US standard population) during 1985-1989. METHODS: A multiple decrement life table was constructed applying age-specific incidence and mortality rates from cross-sectional data sets (1980-1984 and 1985-1989 data for Puerto Rican females and 1987-1989 SEER data sets for US White and Black females) to a hypothetical cohort of 10,000,000 women. The probability of developing invasive breast cancer was computed for the three groups using the long version of DEVCAN: Probability of DEVeloping CANcer software, version 3.3. RESULTS: The lifetime risk of developing breast cancer was 5.4 percent for Puerto Rican females, compared to 8.8 percent for US Black females and 13.0 percent for US White females. Lifetime risk for Puerto Rican females increased from 4.5 percent in 1980-1984 to 5.4 percent in 1985-1989. CONCLUSIONS: Lifetime risk of breast cancer appears to be increasing in Puerto Rico, but remains lower than the probability for US White females. Therefore, the application of lifetime probability of developing invasive breast cancer estimated for the US female population will overestimate the risk for the Puerto Rican female population.

Conocimientos y creencias sobre el cáncer de mama y prácticas de detección temprana en mujeres de edad avanzada en Puerto Rico / Knowledge and beliefs on breast cancer and early detection practices among older women in Puerto Rico

OBJETIVOS: Este es un estudio descriptivo y dirigido a identificar las barreras personales y externas, percibidas por las mujeres de 65 años o más en Puerto Rico, para el cumplimiento con las prácticas de detección tempranma del cáncer de mama. En este artículo se presentan los resultados de la primera fase de la investigación cuyo propósito fue el explorar ideas, opiniones y vocabulario utilizado por mujeres de 65 años y mayores en Puerto Rico sobre el cáncer de mama y las prácticas de detección temprana para la construcción de un cuestionario culturalmente apropriado. TRASFONDO: Las mujeres de edad avanzada tienen un riesgo mayor de enfermar y morir de cáncer de mama de las mujeres más jovens. Sin embargo, llevan a cabo con menor frecuencia las prácticas recomendadas para la detección temprana de la enfermedad. Hay muy poca evidencia empírica sobre las barreras que puedan tener estas mujeres para cumplir con dichas prácticas. METODOLOGIA: Se llevaron a cabo siete grupos focales con una población total de 62 mujeres de edad avanzada, estratificada por zona de residencia y nivel educativo. Mediante un análisis de contenido se identificaron las áreas de preocuopación, temas y asuntos relevantes, y el vocabulario utilizado por las mujeres participantes. RESULTADOS: Se evidenciaron barreras personales y relacionadas con el sistema de servicios de salud. La relación médico-paciente y el nivel educativo aparentan ser variables claves para que las mujeres de edad avanzada cumplan con las prácticas recomendadas para la detección temprana del cáncer de la mama.