Household energy efficiency and health: Area-level analysis of hospital admissions in England.

INTRODUCTION: Fuel poverty affects up to 35% of European homes, which represents a significant burden on society and healthcare systems. Draught proofing homes to prevent heat loss, improved glazing, insulation and heating (energy efficiency measures) can make more homes more affordable to heat. This has prompted significant investment in energy efficiency upgrades for around 40% of UK households to reduce the impact of fuel poverty. Despite some inconsistent evidence, household energy efficiency interventions can improve cardiovascular and respiratory health outcomes. However, the health benefits of these interventions have not been fully explored; this is the focus of this study. METHODS: In this cross sectional ecological study, we conducted two sets of analyses at different spatial resolution to explore population data on housing energy efficiency measures and hospital admissions at the area-level (counts grouped over a 3-year period). Housing data were obtained from three data sets covering housing across England (Household Energy Efficiency Database), Energy Performance Certificate (EPC) and, in the South West of England, the Devon Home Analytics Portal. These databases provided data aggregated to Lower Area Super Output Area and postcode level (Home Analytics Portal only). These datasets provided measures of both state (e.g. EPC ratings) and intervention (e.g. number of boiler replacements), aggregated spatially and temporally to enable cross-sectional analyses with health outcome data. Hospital admissions for adult (over 18 years) asthma, chronic obstructive pulmonary disease (COPD) and cardiovascular disease (CVD) were obtained from the Hospital Episode Statistics database for the national (1st April 2011 to 31st March 2014) and Devon, South West of England (1st April 2014 to 31st March 2017) analyses. Descriptive statistics and regression models were used to describe the associations between small area household energy efficiency measures and hospital admissions. Three main analyses were undertaken to investigate the relationships between; 1) household energy efficiency improvements (i.e. improved glazing, insulation and boiler upgrades); 2) higher levels of energy efficiency ratings (measured by Energy Performance Certificate ratings); 3) energy efficiency improvements and ratings (i.e. physical improvements and rating assessed by the Standard Assessment Procedure) and hospital admissions. RESULTS: In the national analyses, household energy performance certificate ratings ranged from 37 to 83 (mean 61.98; Standard Deviation 5.24). There were a total of 312,837 emergency admissions for asthma, 587,770 for COPD and 839,416 for CVD. While analyses for individual energy efficiency metrics (i.e. boiler upgrades, draught proofing, glazing, loft and wall insulation) were mixed; a unit increase in mean energy performance rating was associated with increases of around 0.5% in asthma and CVD admissions, and 1% higher COPD admission rates. Admission rates were also influenced by the type of dwelling, tenure status (e.g. home owner versus renting), living in a rural area, and minimum winter temperature. DISCUSSION: Despite a range of limitations and some mixed and contrasting findings across the national and local analyses, there was some evidence that areas with more energy efficiency improvements resulted in higher admission rates for respiratory and cardiovascular diseases. This builds on existing evidence highlighting the complex relationships between health and housing. While energy efficiency measures can improve health outcomes (especially when targeting those with chronic respiratory illness), reduced household ventilation rates can impact indoor air quality for example and increase the risk of diseases such as asthma. Alternatively, these findings could be due to the ecological study design, reverse causality, or the non-detection of more vulnerable subpopulations, as well as the targeting of areas with poor housing stock, low income households, and the lack of "whole house approaches" when retrofitting the existing housing stock. CONCLUSION: To be sustainable, household energy efficiency policies and resulting interventions must account for whole house approaches (i.e. consideration of the whole house and occupant lifestyles). These must consider more alternative 'greener' and more sustainable measures, which are capable of accounting for variable lifestyles, as well as the need for adequate heating and ventilation. Larger natural experiments and more complex modelling are needed to further investigate the impact of ongoing dramatic changes in the housing stock and health. STUDY IMPLICATIONS: This study supports the need for more holistic approaches to delivering healthier indoor environments, which must consider a dynamic and complex system with multiple interactions between a range of interrelated factors. These need to consider the drivers and pressures (e.g. quality of the built environment and resident behaviours) resulting in environmental exposures and adverse health outcomes.

The effect of ambient temperature on type-2-diabetes: case-crossover analysis of 4+ million GP consultations across England.

BACKGROUND: Given the double jeopardy of global increases in rates of obesity and climate change, it is increasingly important to recognise the dangers posed to diabetic patients during periods of extreme weather. We aimed to characterise the associations between ambient temperature and general medical practitioner consultations made by a cohort of type-2 diabetic patients. Evidence on the effects of temperature variation in the primary care setting is currently limited. METHODS: Case-crossover analysis of 4,474,943 consultations in England during 2012-2014, linked to localised temperature at place of residence for each patient. Conditional logistic regression was used to assess associations between each temperature-related consultation and control days matched on day-of-week. RESULTS: There was an increased odds of seeking medical consultation associated with high temperatures: Odds ratio (OR) = 1.097 (95% confidence interval = 1.041, 1.156) per 1 °C increase above 22 °C. Odds during low temperatures below 0 °C were also significantly raised: OR = 1.024 (1.019, 1.030). Heat-related consultations were particularly high among diabetics with cardiovascular comorbidities: OR = 1.171 (1.031, 1.331), but there was no heightened risk with renal failure or neuropathy comorbidities. Surprisingly, lower odds of heat-related consultation were associated with the use of diuretics, anticholinergics, antipsychotics or antidepressants compared to non-use, especially among those with cardiovascular comorbidities, although differences were not statistically significant. CONCLUSIONS: Type-2 diabetic patients are at increased odds of medical consultation during days of temperature extremes, especially during hot weather. The common assumption that certain medication use heightens the risk of heat illness was not borne-out by our study on diabetics in a primary care setting and such advice may need to be reconsidered in heat protection plans.

Recreational physical activity in natural environments and implications for health: A population based cross-sectional study in England.

BACKGROUND: Building on evidence that natural environments (e.g. parks, woodlands, beaches) are key locations for physical activity, we estimated the total annual amount of adult recreational physical activity in England's natural environments, and assessed implications for population health. METHODS: A cross-sectional analysis of six waves (2009/10-2014/5) of the nationally representative, Monitor of Engagement with the Natural Environment survey (n=280,790). The survey uses a weekly quota sample, and population weights, to estimate nature visit frequency across England, and provides details on a single, randomly selected visit (n=112,422), including: a) duration; b) activity; and c) environment type. RESULTS: Approximately 8.23 million (95% CIs: 7.93, 8.54) adults (19.5% of the population) made at least one 'active visit' (i.e. ≥30min, ≥3 METs) to natural environments in the previous week, resulting in 1.23 billion (1.14, 1.32) 'active visits' annually. An estimated 3.20 million (3.05, 3.35) of these also reported meeting recommended physical activity guidelines (i.e. ≥5×30min a week) fully, or in part, through such visits. Active visits by this group were associated with an estimated 109,164 (101,736, 116,592) Quality Adjusted Life Years (QALYs) annually. Assuming the social value of a QALY to be £20,000, the annual value of these visits was approximately £2.18 billion (£2.03, £2.33). Results for walking were replicated using WHO's Health Economic Assessment Tool. CONCLUSIONS: Natural environments provide the context for a large proportion of England's recreational physical activity and highlight the need to protect and manage such environments for health purposes.

Integrating health and environmental impact analysis.

Scientific investigations have progressively refined our understanding of the influence of the environment on human health, and the many adverse impacts that human activities exert on the environment, from the local to the planetary level. Nonetheless, throughout the modern public health era, health has been pursued as though our lives and lifestyles are disconnected from ecosystems and their component organisms. The inadequacy of the societal and public health response to obesity, health inequities, and especially global environmental and climate change now calls for an ecological approach which addresses human activity in all its social, economic and cultural complexity. The new approach must be integral to, and interactive, with the natural environment. We see the continuing failure to truly integrate human health and environmental impact analysis as deeply damaging, and we propose a new conceptual model, the ecosystems-enriched Drivers, Pressures, State, Exposure, Effects, Actions or 'eDPSEEA' model, to address this shortcoming. The model recognizes convergence between the concept of ecosystems services which provides a human health and well-being slant to the value of ecosystems while equally emphasizing the health of the environment, and the growing calls for 'ecological public health' as a response to global environmental concerns now suffusing the discourse in public health. More revolution than evolution, ecological public health will demand new perspectives regarding the interconnections among society, the economy, the environment and our health and well-being. Success must be built on collaborations between the disparate scientific communities of the environmental sciences and public health as well as interactions with social scientists, economists and the legal profession. It will require outreach to political and other stakeholders including a currently largely disengaged general public. The need for an effective and robust science-policy interface has never been more pressing. Conceptual models can facilitate this by providing theoretical frameworks and supporting stakeholder engagement process simplifications for inherently complex situations involving environment and human health and well-being. They can be tools to think with, to engage, to communicate and to help navigate in a sea of complexity. We believe models such as eDPSEEA can help frame many of the issues which have become the challenges of the new public health era and can provide the essential platforms necessary for progress.

Oceans and Human Health: a rising tide of challenges and opportunities for Europe.

The European Marine Board recently published a position paper on linking oceans and human health as a strategic research priority for Europe. With this position paper as a reference, the March 2014 Cornwall Oceans and Human Health Workshop brought together key scientists, policy makers, funders, business, and non governmental organisations from Europe and the US to review the recent interdisciplinary and cutting edge research in oceans and human health specifically the growing evidence of the impacts of oceans and seas on human health and wellbeing (and the effects of humans on the oceans). These impacts are a complex mixture of negative influences (e.g. from climate change and extreme weather to harmful algal blooms and chemical pollution) and beneficial factors (e.g. from natural products including seafood to marine renewable energy and wellbeing from interactions with coastal environments). Integrated approaches across disciplines, institutions, and nations in science and policy are needed to protect both the oceans and human health and wellbeing now and in the future.

Changing views of the interconnections between the oceans and human health in Europe.

Early steps in the emergence of the discipline of "Oceans and Human Health" are charted in the USA and discussed in relation to past and present marine environment and human health research activities in Europe. Differences in terminology are considered, as well as differences in circumstances related to the various seas of Europe and the intensity of human coastal activity and impact. Opportunities to progress interdisciplinary research are described, and the value of horizon scanning for the early identification of emerging issues is highlighted. The challenges facing researchers and policymakers addressing oceans and human health issues are outlined and some suggestions offered regarding how further progress in research and training into both the risks and benefits of Oceans and Human Health might be made on both sides of the Atlantic.

Are marine environmental pollutants influencing global patterns of human disease?

Thousands of toxic chemicals, many of which pollute marine ecosystems, potentially cause diseases, but building a consensus view of the significance of human body burdens of environmental chemicals is proving difficult. Causative mechanisms are often lacking. Older members of the population, of which there are increasing numbers worldwide, accumulate higher body burdens than the young, and may be especially at risk. It also remains unclear when crucially sensitive periods for chemical exposures occur across the life course. Very early exposures may lead to diseases much later on. The current lack of robust science upon which to base high quality expert advice is hampering effective policymaking that leads to further reductions in marine pollution, greater protection of marine life and lowering of risks to human health.

Trends in colorectal cancer among hispanics by stage and subsite location: 1989-2006.

OBJECTIVES: Hispanic colorectal cancer (CRC) rates historically have been lower than for non-Hispanic Whites in the United States and in Florida. The aim of this study is to understand CRC trends in Florida Hispanics and non-Hispanic Whites. METHODS: Using a cross-sectional study design, all invasive CRCs diagnosed among Florida residents between 1989 and 2006 were accessed from the Florida Cancer Data System (FCDS). These cases were analyzed by Hispanic and non-Hispanic White ethnic identification. The Hispanic Origin Identification Algorithm was applied to the FCDS data to identify Hispanic subjects. Primary cancer site and histology data were organized according to SEER (Surveillance Epidemiology and End Results) categories. Joinpoint regression was used to generate incidence trends by stage and subsite location. RESULTS: Rates of CRC incidence were higher for Florida Hispanics compared with non-Hispanic Whites since the mid 1990s. There was a consistent significant increase in the incidence of distant stage CRC in Hispanics (annual percent change (APC) of 1.26 and 0.90 in males and females), whereas rates in non-Hispanics decreased significantly during the same time period (APC -1.36 and -1.28, respectively). Similar trends were found in distant-stage right-sided CRC. Among right-sided CRCs, local stage incidence rate increased for both non-Hispanic Whites and Hispanics, whereas the incidence rate for regional stage decreased for both racial/ethnic groups. CONCLUSIONS: Trends for distant-stage CRC are increasing among Florida Hispanics. This is a particular public health concern given that CRC is a cancer for which screening modalities exist and could imply a concomitant increase in CRC-related mortality among Florida Hispanics. Lower rates of CRC screening in Hispanics are documented at the state level, relative to non-Hispanic Whites. Screening programs targeting the Florida Hispanic population are warranted.

Health status and behaviors among adults residing in rural Dominican Republic.

INTRODUCTION: The rapidly increasing burden of chronic diseases linked to adequacy of healthcare services and individual health behaviors is a key determinant of global public health. Given demographic aging and the accompanying health transition, chronic diseases in low and middle income communities of the Dominican Republic are likely to increase significantly. The objective of this article was to report on efforts in surveillance of health conditions and behaviors in underserved rural Dominican communities. METHODS: A modified 30 item, language-sensitive health survey was randomly administered to 117 adult participants (18 years and older) during a health fair held at three rural villages from March to April 2009 in the rural San Cristobál region of the Dominican Republic. Descriptive analyses of select health conditions and behavior variables from all completed surveys were tabulated. RESULTS: Adult participant ages ranged from 18 to 79 years (mean ± standard deviation; 34.0 ± 2.1), height from 1.4 to 2.0 m (1.7 ± 0.1), weight from 41.8 to 100.0 kg (66.2 ± 1.7) and BMI from 15.2 to 46.2 (24.2 ± 0.7). Overall, 69.2% of the sample self-reported their general health status to be fair to poor. The top three chronic diseases included: high blood pressure (35.8%), diabetes (15.0%), and asthma (14.2%). In all, 33.4% reported current smoker status and 61.7% were classified as heavy alcohol drinkers. CONCLUSION: Considerable variation was found in the self-report of health conditions and behavioral characteristics among those individuals that attended the health fair. Documenting these important health indicators in the rural communities has the potential to inform the development of surveillance activities and prevention efforts for future health education interventions.

Indicator microbes correlate with pathogenic bacteria, yeasts and helminthes in sand at a subtropical recreational beach site.

AIMS: Research into the relationship between pathogens, faecal indicator microbes and environmental factors in beach sand has been limited, yet vital to the understanding of the microbial relationship between sand and the water column and to the improvement of criteria for better human health protection at beaches. The objectives of this study were to evaluate the presence and distribution of pathogens in various zones of beach sand (subtidal, intertidal and supratidal) and to assess their relationship with environmental parameters and indicator microbes at a non-point source subtropical marine beach. METHODS AND RESULTS: In this exploratory study in subtropical Miami (Florida, USA), beach sand samples were collected and analysed over the course of 6 days for several pathogens, microbial source tracking markers and indicator microbes. An inverse correlation between moisture content and most indicator microbes was found. Significant associations were identified between some indicator microbes and pathogens (such as nematode larvae and yeasts in the genus Candida), which are from classes of microbes that are rarely evaluated in the context of recreational beach use. CONCLUSIONS: Results indicate that indicator microbes may predict the presence of some of the pathogens, in particular helminthes, yeasts and the bacterial pathogen Staphylococcus aureus including methicillin-resistant forms. Indicator microbes may thus be useful for monitoring beach sand and water quality at non-point source beaches. SIGNIFICANCE AND IMPACT OF THE STUDY: The presence of both indicator microbes and pathogens in beach sand provides one possible explanation for human health effects reported at non-point sources beaches.

The inter-tidal zone is the pathway of input of enterococci to a subtropical recreational marine beach.

Efforts were made to evaluate the source of enterococci levels at a recreational beach. Four monitoring efforts were implemented which included tidal studies, hourly sampling, runoff sampling, and spatially intensive sediment sampling. Spatially intensive sediment sampling indicated that enterococci concentrations consistently decreased away from the inter-tidal zone, both seaward and landward. During dry conditions, the highest concentrations in the water were observed during high tide (71±48 CFU/100 mL) and lower concentrations were observed during low tide (4±3 CFU/100 mL). Runoff was characterised by very high levels (11,700 CFU/100 mL). Results from these monitoring efforts collectively showed that the source of enterococci to the study beach is geographically located within the inter-tidal zone. Wash-in from the inter-tidal zone through tidal action and runoff plays a major role in controlling enterococci levels within the water column. Such results are significant in identifying the source and transport mechanisms of enterococci, which can subsequently be used as part of a modelling effort aimed at predicting enterococci levels at recreational beaches.

Impacts of Hurricanes Katrina and Rita on the microbial landscape of the New Orleans area.

Floodwaters in New Orleans from Hurricanes Katrina and Rita were observed to contain high levels of fecal indicator bacteria and microbial pathogens, generating concern about long-term impacts of these floodwaters on the sediment and water quality of the New Orleans area and Lake Pontchartrain. We show here that fecal indicator microbe concentrations in offshore waters from Lake Pontchartrain returned to prehurricane concentrations within 2 months of the flooding induced by these hurricanes. Vibrio and Legionella species within the lake were more abundant in samples collected shortly after the floodwaters had receded compared with samples taken within the subsequent 3 months; no evidence of a long-term hurricane-induced algal bloom was observed. Giardia and Cryptosporidium were detected in canal waters. Elevated levels of fecal indicator bacteria observed in sediment could not be solely attributed to impacts from floodwaters, as both flooded and nonflooded areas exhibited elevated levels of fecal indicator bacteria. Evidence from measurements of Bifidobacterium and bacterial diversity analysis suggest that the fecal indicator bacteria observed in the sediment were from human fecal sources. Epidemiologic studies are highly recommended to evaluate the human health effects of the sediments deposited by the floodwaters.

Oceans and human health: Emerging public health risks in the marine environment.

There has been an increasing recognition of the inter-relationship between human health and the oceans. Traditionally, the focus of research and concern has been on the impact of human activities on the oceans, particularly through anthropogenic pollution and the exploitation of marine resources. More recently, there has been recognition of the potential direct impact of the oceans on human health, both detrimental and beneficial. Areas identified include: global change, harmful algal blooms (HABs), microbial and chemical contamination of marine waters and seafood, and marine models and natural products from the seas. It is hoped that through the recognition of the inter-dependence of the health of both humans and the oceans, efforts will be made to restore and preserve the oceans.

A pilot study of children's exposure to CCA-treated wood from playground equipment.

Arsenic from chromated copper arsenate (CCA)-treated wood, widely used in playgrounds and other outdoor equipment, can persist as surface residues on wood. This raises concerns about possible health risks associated with children playing on CCA-treated playgrounds. In a Pilot Study, 11 children (13-71 months) in homes with and without CCA-treated playgrounds were evaluated with post-exposure hand rinses and urine for total arsenic. Samples of wood, soil, and mulch, as well as synthetic wipes, were sampled for total arsenic. In non-CCA-treated playgrounds vs. CCA-treated playgrounds, respectively, wood arsenic was <2.0 mg/kg vs. mean arsenic 2370 mg/kg (range 1440-3270 mg/kg); soil arsenic was <3.0 mg/kg vs. mean arsenic of 19 mg/kg (range 4.0-42 mg/kg); mulch arsenic at one non-CCA-treated playground was 0.4 mg/kg vs. two CCA-treated playgrounds of 0.6 and 69 mg/kg. The arsenic removed using a synthetic wipe at non-CCA-treated playgrounds was <0.5 microg, while mean arsenic from CCA-treated wood was 117 microg (range 1.0-313). The arsenic mass from hand rinses for children who played at non-CCA-treated playgrounds was <0.2 microg, while mean arsenic mass was 0.6 microg (range <0.2-1.9) at CCA-treated playgrounds. Mean urinary total arsenic levels were 13.6 pg/ml (range 7.2-23.1 pg/ml) for all children evaluated, but there was no association between access to CCA-playgrounds and urinary arsenic levels. Arsenic speciation was not performed. This preliminary Pilot Study of CCA-treated wood playgrounds observed dislodgeable arsenic on 11 children's hands after brief periods of play exposure. Future efforts should increase the number of children and the play exposure periods, and incorporate speciation in order to discriminate between various sources of arsenic.

Acute and chronic disability among U.S. farmers and pesticide applicators: the National Health Interview Survey (NHIS).

The National Health Interview Survey (NHIS) is a multipurpose household survey of the U.S. civilian non-institutionalized population conducted annually since 1957. From 1986 to 1994, over 450,000 U.S. workers, age 18 years and older, participated in a probability sampling of the entire non-institutionalized U.S. population; variables collected included a range of measures of acute and chronic disability. The objective of the present study was to assess predictors of health status, and acute and chronic disability for farmers and pesticide applicators (pesticide-exposed workers) compared to all other U.S. workers using the 1986-1994 NHIS. After adjustment for sample weights and design effects using SUDAAN, several measures of acute and chronic disability and health status were modeled with multiple logistic regression. Farmers (n = 9576) were significantly older compared to all other U.S. workers (n = 453,219) and pesticide applicators (n = 180). Farmers and pesticide applicators had a higher proportion of males, whites, and Hispanics and were less educated. After adjusting for age, gender, race-ethnicity, and education, compared to all other workers, farmers were significantly less likely to report acute and chronic disability and health conditions, while pesticide applicators were more likely to report chronic disability, health conditions, and poor health. Given the cross-sectional nature of the data and the significant job demands of farming, both leading to a relative healthy worker effect, the present results indicate that at any point in time, farmers report less acute and chronic disability, compared to other U.S. workers, whereas pesticide applicators report similar or poorer health.

Pilot detection study of alpha(1) antitrypsin deficiency in a targeted population.

Screenings for the genetic disorder alpha(1) antitrypsin deficiency (AAT Deficiency) have been one of two models: large screenings of general populations and small targeted detection programs in high-risk groups. The most appropriate screening and detection methodologies in terms of target populations, subject participation and yield of positive tests, however, have not been well defined. The major objective of this pilot study was to evaluate the effectiveness in terms of participation of two different AAT Deficiency detection programs using a self-administered fingerstick blood test. Individuals ages 30-60 under the care of a pulmonary physician and with a diagnosis of emphysema, COPD, chronic bronchitis, or bronchiectasis were the targeted population. Participants were offered AAT Deficiency testing in the pulmonary physician's office compared with testing offered through mail. Participation (i.e., frequency of subject participation in the detection program) of two different AAT Deficiency detection programs. Non-participation was due to fear of self-administered testing and research studies; women were more likely to participate than men. Eligible subjects were significantly more likely to participate when offered testing by their pulmonary physician in-office (83%) than mail-only (42%) (P < 0.02). Although self-administered genetic testing is available, highest participation in AAT Deficiency detection program was found when offered directly by the physician. This finding may have implications for screening and detection of other genetic diseases. Future studies need to evaluate the yield (i.e., frequency of positive tests) of these detection methodologies in highly targeted populations.

Lymphoma and lymphoid leukemia incidence in Florida children: ethnic and racial distribution.

BACKGROUND: Incidence reports for pediatric lymphoma and lymphoid leukemia in Hispanic subpopulations in the United States are rare. The authors hypothesized that Florida's Hispanic children would have higher risks of lymphoma and lymphoid leukemia compared with non-Hispanic white children. METHODS: All cases of lymphoid leukemia, Hodgkin, non-Hodgkin, and Burkitt lymphoma (SEER International Classification of Diseases for Oncology codes) in children (< 15 years) in the Florida Cancer Data System (FCDS) from 1985 to 1997 were studied. Cases were classified as: 1) white, 2) Hispanic, or 3) black, and stratified by age. Age-adjusted rates for the three race-ethnic groups were calculated. Rates for Hispanics and blacks were compared with whites as standardized rate ratios (SRR) with 95% confidence intervals. RESULTS: Seven hundred thirty-one incident cases of pediatric lymphoma and 1231 cases of lymphoid leukemia were identified during the study period. For children with lymphoma, the SRR for Hispanics was 1.32 (95% CI, 1.20-1.44), and for blacks, the SRR was 0.68 (95% CI, 0.63-0.72. For lymphoid leukemia, the SRR for Hispanics was 1.29 (95% CI, 1.28-1.30), and for blacks, the SRR was 0.55 (95% CI, 0.54-0.56). Similar rates were found for the Hodgkin and non-Hodgkin subgroups. CONCLUSIONS: Incidences of Hodgkin and non-Hodgkin lymphoma were significantly higher in Florida's Hispanic children, with 30% increased relative risks, compared with whites. Black children had significantly decreased incidences and risk. Results for lymphoid leukemia were similar. Incidence of lymphoma in Florida's Hispanic children (primarily Cuban and Central American origin) differed from similar reports from Texas and California, where Hispanics are primarily of Mexican origin.

Hepatocellular carcinoma incidence in Florida. Ethnic and racial distribution.

BACKGROUND: Hepatocellular carcinoma (HCC), the primary form of liver carcinoma, is increasing in incidence worldwide. The increasing numbers of Hispanic immigrants in Florida suggest that the rate of HCC in the Hispanic population should be of special concern. This study describes racial and ethnic distribution and trends of incident HCC in Florida from 1985 to 1995. METHODS: A total of 2837 cases of incident HCC from 1985 to 1995 were examined from Florida's incident cancer registry, the Florida Cancer Data System. Age standardized and age specific average annual incidence rates were calculated for the state of Florida by gender and by racial and ethnic group. RESULTS: Over the study period, the average annual incidence HCC rates in Florida among male and female Hispanics and blacks were consistently and significantly twice the rate of white males and females as standardized rate ratios. Males were at least twice as likely to have HCC compared with females in all three racial and ethnic subpopulations. CONCLUSIONS: The incidence of HCC in Florida was comparable to the overall U.S. incidence with respect to average annual incidence and gender distribution. Florida blacks and Hispanics are at significantly increased risk for HCC incidence compared with Florida whites. These results have implications for preventive HCC recommendations in growing racial and ethnic subpopulations in the United States.

Formation and current results of a patient-organized registry for alpha(1)-antitrypsin deficiency.

BACKGROUND: Significant challenges exist to investigating uncommon illnesses because too few patients are seen at any single clinical center to permit appropriate research studies. Recognizing this impediment to clinical research in alpha(1)-antitrypsin deficiency, the Alpha One Foundation, a patient-organized research foundation, has collaborated with clinician-scientists to organize a voluntary registry of individuals with alpha(1)-antitrypsin deficiency. PURPOSE: To facilitate clinical research in alpha(1)-antitrypsin deficiency by organizing a registry of affected individuals willing to be approached to participate in clinical studies. METHODS: Elements of the Alpha One Foundation Research Network Registry include a Medical and Scientific Advisory Committee, composed of physician-investigators and patient advocates, designated clinical resource centers at medical institutions with expertise in the management of individuals with alpha(1)-antitrypsin deficiency, and a data coordinating center with responsibility for database management and analysis. Questionnaires requesting information about demographic features, alpha(1)-antitrypsin phenotype, smoking history, and health-care utilization were distributed to prospective registrants through the following channels: mailings from the Alpha One Foundation; mailings from the clinical resource centers; and distribution by home-care and pharmaceutical companies. Information from this questionnaire formed the basis of the initial registry database. RESULTS: Between May 1997 and June 1999, 7,789 forms were distributed, and forms were returned by 712 unique registrants. Registrants have the following characteristics: mean (+/- SD) age, 49.3+/-13.2 years; women, 47.7%; white, 96.2%; PI*ZZ phenotype, 70.7%; ex-smokers, 73.3%; COPD patients, 87.2% (emphysema patients, 54.2%; chronic bronchitis patients, 33%); and self-reported liver disease, 6.4%. The mean number of physician visits reported by registrants in the preceding 12 months was 7.8+/-9.4, 59% reported currently receiving IV augmentation therapy, and 35% reported using supplemental oxygen at home. Examples of ongoing research studies using this unique database include: (1) a case-control study to evaluate occupational risk factors for obstructive lung disease in individuals with alpha(1)-antitrypsin deficiency and (2) a study to evaluate the health-care costs for affected individuals. CONCLUSIONS: A registry currently including 712 individuals with alpha(1)-antitrypsin deficiency has been organized through a collaboration between physician-investigators and a patient-organized research foundation. Use of the registry has already facilitated studies that were previously difficult because of the paucity of identifiable study subjects. The registry cohort promises to provide an important resource for future clinical and epidemiologic studies.