Comparison of the French DRG based information system (PMSI) with the National Mesothelioma Surveillance Program database

BACKGROUND: One of the main purposes of the French National Mesothelioma Surveillance Program is to estimate and follow the national incidence of pleural mesothelioma. We wanted to study the contribution of the French hospital national database as a valid source of mesothelioma incident cases. METHODS: From the 1998 and 1999 hospital national database, medical records with a diagnosis code of mesothelioma or pleural cancer where selected among patients who resided in one of the 17 administrative divisions covered by the National Mesothelioma Surveillance Program in 1998. From these records, 506 patients in 1998 and 474 patients in 1999 where identified and matched with the National Mesothelioma Surveillance Program cases over the same period using indirect criteria of identification (sex, age, place of residence). Medical records of cases unknown by the National Mesothelioma Surveillance Program where consulted in one of the administrative divisions. RESULTS: Only two-thirds of the registered cases of the National Mesothelioma Surveillance Program could be matched with a patient identified in the hospital national database with a diagnosis of mesothelioma registered during the same year. Consultation of the medical records showed that 1) certified cases registered in the National Mesothelioma Surveillance Program where often (83%) found in the hospital national database with a code of mesothelioma but 10 to 15% of the patients with a code of mesothelioma in the national hospital databases had a different diagnosis according to their medical records; 2) 65% of the patients with a code of mesothelioma in the national hospital databases that where unknown from the National Mesothelioma Surveillance Program in 1998 and 55% in 1999 where prevalent cases; 3) 3 suspected cases had not been reported to the National Mesothelioma Surveillance Program. CONCLUSION: Because of lack of diagnosis certification, mistakes in encoding diagnosis and the fact that incident and prevalent cases cannot be distinguished in the hospital national database make it impossible to estimate the mesothelioma incidence solely from this source of data. However, the hospital claim databases constitute a complementary source of information for the active search of incident cases performed by the National Mesothelioma Surveillance Program.     

Recent trends in mesothelioma incidence in the United States

Mesothelioma incidence rates based on data from population-based cancer registries in New York State (exclusive of New York City), Los Angeles County, California, and the SEER Program of the National Cancer Institute were analyzed for trends, using original cancer registry diagnoses. Results indicate a significant increase in incidence during 1973-80 for pleural mesothelioma among white males older than 55 at time of diagnosis but not for other age-race-sex-site subgroups. A histopathologic review of New York State and Los Angeles County cases by two independent pathologists, expert in the diagnosis of mesothelioma, lowered the overall estimates but a significant upward trend remained. The observed trend does not appear to be related to changes in diagnostic practice. The results of a five-member panel of expert pathologists will be published in a separate methodology paper.     

Use of 13 disease registries in 5 countries demonstrates the potential to use outcome data to improve health care's value

As health care systems worldwide struggle with rising costs, a consensus is emerging to refocus reform efforts on value, as determined by the evaluation of patient outcomes relative to costs. One method of using outcome data to improve health care value is the disease registry. An international study of thirteen registries in five countries (Australia, Denmark, Sweden, the United Kingdom, and the United States) suggests that by making outcome data transparent to both practitioners and the public, well-managed registries enable medical professionals to engage in continuous learning and to identify and share best clinical practices. The apparent result: improved health outcomes, often at lower cost. For example, we calculate that if the United States had a registry for hip replacement surgery comparable to one in Sweden that enabled reductions in the rates at which these surgeries are performed a second time to replace or repair hip prostheses, the United States would avoid $2 billion of an expected $24 billion in total costs for these surgeries in 2015.     

Development of Sustain™: A.S.P.E.N.'s National Patient Registry for Nutrition Care

The American Society for Parenteral and Enteral Nutrition (A.S.P.E.N.) developed a Web-based registry for nutrition care launched in early 2011, initially focusing on the home parenteral nutrition (HPN) patient population. The purpose of Sustain is to collect information regarding the patients and populations who require HPN in the United States, measure outcomes associated with HPN, allow institutional benchmarking against the aggregate data, and publish the findings to improve the quality of care for patients receiving HPN. The registry is open to all sites (hospital and home based) who care for new or existing HPN patients. Preliminary data should be available in early 2012.     

High incidence of mesothelioma in an English city without heavy industrial use of asbestos

BACKGROUND: Mesothelioma rates are increasing in the industrialized world, related to occupational asbestos exposure. The highest rates have been reported from areas with specific industries such as shipbuilding or mining. Lower rates have been reported from areas without such industries. We studied an area without heavy industry to examine if such a pattern occurred in England. METHODS: We studied the population of Exeter Primary Care Trust, Devon, United Kingdom, with a population of 131,849. Exeter has no mining, shipbuilding or other heavy industry. All lung cancers and mesotheliomas were identified from the local cancer registry, supplemented by searches at all primary care practices. The cancer diagnoses were checked by inspection of histology or primary care records. Occupational data were extracted from the primary care records. RESULTS: The searches revealed 291 lung cancers, 283 of which had either histological proof or strong clinical evidence for the diagnosis. Twenty-two (8 per cent) of these were pleural mesotheliomas, 17 of these occurring in men. The incidence rate of mesothelioma in men over 40 years was 12.1 per 100,000 per year (95 per cent confidence intervals 7.0-19.3), one of the highest reported rates in the world. CONCLUSION: The mesothelioma epidemic will extend to areas without local heavy industrial exposure.     

Two cases of pleural mesothelioma following unusual and unrecognized exposure to asbestos. The role of Occupational Health and Safety Service in identifying past occupational exposure

BACKGROUND: In Italy there was a wide use of asbestos in various manufacturing sectors and for many different uses, some of which are still partly or completely unknown. A detailed reconstruction of the work histories of mesothelioma patients made it possible, in some cases, to identify ignored circumstances of asbestos exposure. Moreover, the identification of cluster of cases takes on special significance in suggesting a possible previous asbestos exposure, where the information collected on single cases do not imply as much. OBJECTIVES: This report concerns two cases of malignant mesothelioma that occurred in two workers employed in the same processes in a small factory that manufactured and repaired electric motors for hand tools. METHODS AND RESULTS: In the Province of Brescia (one million inhabitants) a Mesothelioma Register is in operation. The first case was classified, according to Re.Na.M.1996 criteria (National Mesothelioma Register) as "unknown" occupational exposure. The identification of a second case, that was discovered thanks to the surveillance system of the Mesothelioma Register, encouraged the local Occupational Health and Safety Service to perform a more detailed investigation that revealed, for both subjects, previously unknown occupational exposure. This consisted of grinding, in a damp setting, electric motor parts bushed with phenolic thermosetting resins reinforced with chrysotile asbestos. Moreover, weekly cleaning of the plants could have been an occasion for dust dispersion. It is likely that this exposure did not last long and was limited in extent. Other similar reports of such circumstances of occupational exposure were not available in the literature. CONCLUSIONS: The results confirm the high information value of systematic collection of incidental cases in the population, which is feasible thanks to the disease register, and the significant role of the local Occupational Health Services in demonstrating past asbestos exposure.     

Strengthening biostatistics resources in sub-Saharan Africa: research collaborations through U.S. partnerships

On September 30, 2009, the National Institute of Allergy and Infectious Diseases (NIAID), National Institutes of Health (NIH) conducted a workshop on strengthening biostatistics resources in sub-Saharan Africa (SSA). An increase in global spending on health research over the last decade has boosted funds available to conduct biomedical research in low- to mid-income countries. The HIV/AIDS pandemic, the re-emergence of malaria and tuberculosis, and other emerging infectious agents are major driving forces behind the increase in biomedical research and clinical care programs (clinical trials, observational studies and, other public health programs) in SSA (Exp. Biol. Med. 2008; 233:277-285). In addition, the increased engagement of the United States (U.S.) government through the Global Health Initiative, which expands the traditional focus beyond infectious diseases to other causes of poor health and to the recognition of need the to strengthen health systems for a sustainable response, only increases the need for in-depth in-country expertise in all aspects of biomedical research (White House Press Release, 2009). In this workshop, researchers both from the U.S. and SSA were invited to discuss their collaborative work, to discuss ways in which biostatistical activities are carried out within their research projects, and to identify both general and specific needs for capacity building in biostatistics. Capacity building discussions highlighted the critical need to increase the number of well-trained in-country biostatisticians, both to participate in ongoing studies and to contribute to an infrastructure that can produce the next generation of biostatistical researchers.     

A national disease registry moves beyond clinical impact, fostering measurable cost savings at the community hospital level

National disease registries have existed for many years, and give hospitals and medical professionals centralized, disease-specific databases that can be used to study both treatment protocols and quality outcomes. To date, most efforts have focused on the quality management and clinical aspects of disease registries. However, Sierra Nevada Memorial Hospital, using the National Registry for Myocardial Infarction, recently concluded a study that identified and then attempted to quantify several positive financial effects on the hospital in terms of improved cost outcomes and resource management. The study concluded that activities that improve clinical outcomes (reduce mortality, morbidity, and complications) for acute myocardial infarction (AMI) patients can have a wide range of effects not only for the patients themselves, but also on the cost of care and the utilization of resources. The study discovered that these effects can be measured and expressed quantitatively or qualitatively. Consequently, improving the clinical quality of AMI patient care or reducing the costs of that care can be expected to produce enhanced value for health care consumers, providers, and the health care economy. Furthermore, it is highly likely that this principle would apply to many other kinds of disease registry programs when used to support quality improvement activities.     

Job tasks,potential exposures,and health risks of laborers employed in the construction industry

Construction laborers have some of the highest death rates of any occupation in the United States. There has been very little systematic research focused exclusively on “laborers” as opposed to other workers in the construction industry. We reviewed the English language literature and various data bases describing the occupational tasks, exposures, and work-related health risks of construction laborers. The sources of information included 1) occupational mortality surveillance data collected by the states of California and Washington and the National Institute for Occupational Safety and Health (NIOSH); 2) National Occupational Exposure Survey; 3) national fatality data; 4) cancer registry data; and 5) case reports of specific causes of morbidity. While the literature reported that construction laborers have increased risk for mesothelioma, on-the-job trauma, acute lead poisoning, musculoskeletal injury, and dermatitis, the work relatedness of excess risks for all-cause mortality, cirrhosis, cerebrovascular disease, chronic obstructive pulmonary disease, ischemic heart disease, and leukemia is less clear. Furthermore, while laborers are known to be potentially exposed to asbestos, noise, and lead, and the NIOSH Job Exposure Matrix describes other potential hazardous exposures, little research has characterized other possible exposures and no research has been found that describes the exposures associated with specific job tasks. More advanced study designs are needed that include a better understanding of the job tasks and exposures to construction laborers, in order to evaluate specific exposure-disease relationships and to develop intervention programs aimed at reducing the rate of work-related diseases. © 1993 Wiley-Liss, Inc.

1 This article is a US Government work and, as such, is in the public domain in the United States of America.

     

Congenital rubella syndrome in the United States, 1970-1985. On the verge of elimination

The National Congenital Rubella Syndrome Registry, a passive surveillance system, and the Birth Defects Monitoring Program, a newborn hospital discharge data set, are used to monitor the incidence of congenital rubella syndrome in the United States. Reports to the registry contain clinical and laboratory data which allow cases to be classified into six categories according to the likelihood of having congenital rubella syndrome. The monitoring program records newborn discharge diagnoses, without detailed information, of a nonrandom sample of about one fourth of the births in the United States annually. To evaluate the two systems and to estimate the actual incidence of congenital rubella syndrome, the authors collected hospital discharge summaries on all cases as reported by the monitoring program from 1970-1985 and classified them by the registry criteria. Of the 392 cases reported to the monitoring program during 1970-1985, 24% (n = 93) could be classified as confirmed or compatible compared with 79% (n = 415) of the 526 cases reported to the registry (rate ratio = 3.3; 95% confidence interval (CI) 2.9-3.8). Diagnosis of congenital rubella syndrome was made during the neonatal period for 68% (263 of 389) registry cases for whom such data were available. When the Lincoln-Peterson capture-recapture method of estimating population size for independent surveillance systems was used, an estimated 1,064 confirmed and compatible cases (95% CI 668-1,460) diagnosed during the neonatal period occurred during 1970-1979, for an average of 106 cases per year. During 1980-1985, an estimate of 122 neonatal confirmed and compatible cases (95% CI 8-236) occurred, for an average of 20 cases per year. A downward secular trend in the incidence of congenital rubella syndrome beginning in 1980 was observed. The registry detected 22% of all neonatal confirmed and compatible cases, the monitoring program detected 8%, and the two systems combined detected a total of 28%. The results indicate that congenital rubella syndrome may be on the verge of elimination in the United States.     

Cluster of malignant mesothelioma cases in a thermostat manufacturing industry

BACKGROUND: Malignant mesothelioma is a rare disease and the identification of a cluster of cases suggests a possible presence of an asbestos contamination source. OBJECTIVES: To describe 3 cases of malignant mesothelioma (2 pleural and 1 peritoneal) that occurred in workers employed in the same thermostat factory. METHODS: Since this occupational sector is not traditionally known for asbestos exposure the Lombardy Mesothelioma Registry proposed to Local Occupational Health Unit to investigate this industry. RESULTS: From the first inspection of the plant, an environmental asbestos contamination (ropes covering oven handle and gasket) was found. But the greatest source of exposure was identified in the melamine resin reinforced with asbestos that constituted some internal parts of thermostats and that were sheared and perforated by the workers. So the 3 cases were defined as occupational diseases and legal procedures were initiated. CONCLUSION: The results underline the importance of a close cooperation within Local Occupational Health Units and Mesothelioma Registry in the identification and evaluation of asbestos occupational exposure otherwise not recognized, determining thus the loss of precious information.     

Battling AIDS in America: an evaluation of the National HIV/AIDS Strategy

Thirty years ago, the Centers for Disease Control and Prevention reported the first cases of AIDS in the United States. Since then, more than half a million Americans have died of AIDS, and 1.1 million people are currently living with HIV in the United States. In an attempt to reinvigorate the domestic response to the HIV epidemic, the Obama administration developed and released the National HIV/AIDS Strategy for the United States (NHAS). The NHAS has 3 focus areas: reducing new infections, improving access to care and health outcomes, and reducing HIV-related disparities. With ambitious five-year targets set for each goal, the NHAS requires significant fiscal investment to achieve its desired impact on the domestic HIV epidemic.     

Current therapies for malignant pleural mesothelioma

Mesothelioma is a highly lethal tumor derived from mesothelial cells, and its global incidence is increasing because of widespread exposure of numerous individuals to asbestos in the last 50 years. Mesothelioma is largely untreatable with any of the therapeutic modalities. Recently, a novel multitargeted antifolate pemetrexed has shown promising activity against malignant pleural mesothelioma, producing response rates of up to 40% when used in combination with cisplatin. In a large phase III study, use of a combination of pemetrexed and cisplatin was associated with significantly improved survival time and with greater antitumor activity compared with cisplatin alone. This combination also gave a significant response rate of approximately 50% in patients with epithelioid malignant pleural mesothelioma. These clinical benefits of pemetrexed–cisplatin doublet have changed the perception of mesothelioma chemotherapy. Other combinations, including gemcitabine in combination with cisplatin, have also shown encouraging response rates. Prognosis depends on gender, clinical stage of the tumor, histological subtype, platelet count, leukocyte counts, and performance status. Radiotherapy can palliate mesothelioma patients with chest pain, and has been indicated to be of benefit for the prevention of malignant seeding along the tract of a chest tube or needle biopsy. Trimodality treatment using extrapleural pneumonectomy, radiation and chemotherapy has shown promising therapeutic value. The development of chemotherapeutic regimens and the favorable outcomes of trimodality have led to new combined modality trials. In Japan, multicenter national trials against mesothelioma will begin in the near future.     

Malignant mesothelioma in Italy, 1997

BACKGROUND: The Italian National Mesothelioma Register (ReNaM) was set up at the Istituto Superiore Prevenzione e Sicurezza Lavoro (ISPESL), in Rome, in accordance with Art. 36 of Italian Legislative Decree No. 277 [1991]. METHODS: Five Italian regions, Piedmont, Liguria, Emilia-Romagna, Tuscany, and Apulia, agreed to record mesothelioma cases according to guidelines established by ISPESL, to define exposure to asbestos and transmit the data systematically to ISPESL. RESULTS: Four hundred and twenty-nine mesothelioma cases, diagnosed in 1997, are recorded. The standardized annual incidence rate for definite pleural mesothelioma is 1.51 per 100,000 inhabitants (2.26 for males and 0.79 for females). Exposure was defined for 198 mesotheliomas with a histological diagnosis: 125 (63%) refer to occupational exposure, 10 (5%) to environmental exposure, and 5 (2.5%) to household exposure. CONCLUSIONS: Despite the ReNaM's work, many limitations still have to be overcome. Clear-cut information on asbestos exposure is available for a limited number of cases; and differing regional procedures in collecting and evaluating mesotheloma cases exist. At this stage the identification and evaluation of a large number of cases of mesothelioma is a worthwhile result. This epidemiological surveillance, currently being extended to other regions, will enable us to better assess the impact and diffusion of this disease in future, and to monitor more closely the effects of ceasing asbestos use in 1992, and the efficacy of preventive measures since mid '70s. Am. J. Ind. Med. 45:55-62, 2004.     

Perceived barriers to the regionalization of adult critical care in the United States: a qualitative preliminary study

Background  

Regionalization of adult critical care services may improve outcomes for critically ill patients. We sought to develop a framework for understanding clinician attitudes toward regionalization and potential barriers to developing a tiered, regionalized system of care in the United States.     

Malignant mesothelioma of the pleura among seafarers

BACKGROUND: A large amount of data indicates that seafarers are at risk for asbestos disease. Objectives: To trace the outlines of pleural mesothelioma among seafarers. METHODS: Pleural mesotheliomas diagnosed among seamen in the Trieste-Monfalcone area, Italy, in the period 1973-2003, were reviewed. RESULTS: The series comprised 50 men aged between 53 and 91 years (mean age 75.7 years). The diagnosis of mesothelioma was confirmed by necropsy in 38 cases. The patients had served in the Italian Navy (24 persons), in the merchant navy (17 persons), or in both (9 persons). The trades were various including engine room as well as deck personnel. Asbestos bodies were detected on routine lung sections in 55% of the necropsy cases. Asbestos bodies isolated from the lungs in three cases ranged between 2100 and 7000 bodies per gram of dried tissue. Latency periods ranged between 33 and 72 years (mean 56.1 years). CONCLUSIONS: When compared with shipyard workers, the seamen with mesothelioma show signs of less intense exposure to asbestos, and longer latency periods. Mesothelioma in seamen should be considered as an occupational disease.     

Distribution of mesothelioma cases in different occupational groups and industries in Australia, 1979-1995

Australia was a producer and user of asbestos and has one of the highest national incidences of mesothelioma in the world. The incidence is still rising and expected to do so for another 10-20 years. A study was conducted in 1996 to examine the past and current incidence rates of mesothelioma in a number of industries and occupations as the basis for predicting future outcomes. Occupational histories of a total of 3758 mesothelioma cases collected by two sequential national schemes--the Australian Mesothelioma Surveillance Program (1979-1985) and Australian Mesothelioma Register (1986-1995)--were reviewed and coded by the authors. The building industry contributed the largest number of cases nationwide followed by shipbuilding and repair, asbestos cement production, crocidolite mining and milling, railway locomotive construction and repair, coal-fired power stations, and other engineering operations. The mean latency between initial occupational asbestos exposure and diagnosis of the disease was 37.4 years (range = 4-66 years) for cases notified between 1979 and 1985, and 41.4 years (range = 6-84 years) for those between 1986 and 1995. Trends for each industry group have been changing considerably in the past 16 years, with the traditional primary asbestos industry cases from crocidolite mining and milling now on the decline and cases from asbestos cement production having plateaued. In contrast, more recently, more cases were observed from the asbestos user industries such as the building industry, and from occupations such as plumbers, carpenters, machinists, and car mechanics. These increases might be a reflection of the longer latency effects of the intermittent and less severe exposures in these larger occupational groups.     

Patients' and healthcare providers' understandings of life-sustaining treatment: are perceptions of goals shared or divergent?

In this cross-sectional qualitative study, researchers performed in-depth, semistructured interviews with 30 pairs of patients and their primary care providers in an outpatient clinic of a large, urban Veterans Affairs (VA) medical center in the United States. During audiotaped interviews to assess their understanding of advance directive concepts, participants were asked what "life-sustaining treatment" means to them and why they think of it in the way they do. The findings indicate that patients and providers in the United States tend to view and discuss life-sustaining treatment in terms of four goals for end-of-life care: (1) extending the length of life, (2) improving the quality of life, (3) maintaining or improving specific biological functions, and (4) assisting the body for a temporary period of time. Patients thought providers were more concerned with extending the length of life than with quality-based outcomes, and patients often discussed life-sustaining treatment as acceptable means for short-term but not long-term use. Many providers indicated that they struggle with conflicting quality-based and physiologic care goals. The findings highlight the importance of eliciting patient preferences not only for specific types of treatment, such as cardiopulmonary resuscitation, but also for end-of-life care goals or desired health-related outcomes, such as maximizing the quantity of life. The findings also suggest that advance directives and patient-provider discussions that focus on acceptable health states and valued life activities may be better suited to patients' end-of-life care goals than those that focus on specific medical interventions.     

Occupational health reporting systems--USA

The three-fold purpose of this paper is to (1) describe the occupational hazard and health effect information systems used by the National Institute for Occupational Safety and Health (NIOSH), (2) highlight the parts of these data systems that are relevant to the topic of this dermatologic disease and chronic trauma workshop, and (3) to note the inadequacies of existing data systems in the United States.