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[Standards, options and recommendations (SOR) for diagnosis, treatment and follow-up of osteosarcoma. Groupe de travail SOR].

CONTEXT: The "Standards, Options and Recommendations" (SOR) project, started in 1993, is a collaboration between the Federation of the French Cancer Centres (FNCLCC), the 20 French Cancer Centres and specialists from French Public Universities, General Hospitals and Private Clinics. For pediatric issues, this project is a collaboration between the FNCLCC and the French Society of Pediatric Oncology (SFOP). The main objective is the development of clinical practice guidelines to improve the quality of health care and outcome for cancer patients. The methodology is based on literature review and critical appraisal by a multidisciplinary group of experts, with feedback from specialists in cancer care delivery. OBJECTIVES: To develop clinical practice guidelines according to the definitions of Standards, Options and Recommendations for the clinical care of osteosarcoma in children and adult. METHODS: Data have been identified by literature search using Medline (1985-december 1998) and the expert groups personal reference lists. The main criteria considered were incidence, risk factors, prognostic factors and efficacy of treatment. Once the guidelines were defined, the document was submitted for review to 27 national and international independent reviewers, and to the medical committees of the 20 French Cancer Centres and, in particular, the 4 which have particular expertise in pediatric cancer management. RESULTS: The main recommendations for osteosarcoma management are that: 1) the clinical diagnosis is based on appropriate clinical and radiological findings; 2) the final diagnosis is pathological and the biopsy should be performed by the surgeon who will subsequently perform the definitive surgery; 3) surgical biopsy must be of adequate size and performed by an experienced surgeon; 4) the therapeutic strategy for osteosarcoma is based on surgery with neoadjuvant and adjuvant chemotherapy given in experienced centres. Inclusion of high dose methotrexate is recommended for children, and the dose of methotrexate must be adapted for adults. Inclusion of children in SFOP protocols and adults in EORTC and FNCLCC clinical trials is recommended; 5) treatment of metastatic osteosarcoma is based on chemotherapy and surgery to lung metastases which may be curative. Amputation is rarely appropriate. Inclusion of children in SFOP and of adult in EORTC and FNCLCC clinical trials for metastatic osteosarcoma is recommended; 6) at the present time, there are no clear data on which to base guidelines for timing and duration of follow-up studies in this condition.

Antineoplastic Agents↗

[Standards, options and recommendations (SOR) for clinical care of rhabdomyosarcoma (RMS) and other soft tissue sarcoma in children. Federation of the French Cancer Centers. French Society of Pediatric Oncology].

CONTEXT: The "Standards, Options and Recommendations" (SOR) project, started in 1993, is a collaboration between the Federation of the French Cancer Centres (FNCLCC), the 20 French Cancer Centres and specialists from French Public Universities, General Hospitals and Private Clinics. For pediatric issues, this project is a collaboration between the FNCLCC and the French Society of Pediatric Oncology (SFOP). The main objective is the development of clinical practice guidelines to improve the quality of health care and outcomes for cancer patients. The methodology is based on literature review and critical appraisal by a multidisciplinary group of experts, with feedback from specialists in cancer care delivery. OBJECTIVES: To develop a clinical practice guideline according to the definitions of Standards, Options and Recommendations for the clinical care of rhabdomyosarcoma and other soft tissue sarcoma in children and adolescents. METHODS: Data have been identified by literature search using Medline (1985-may 1997) and experts group personal references lists. The main criteria considered were incidence, risk factors, prognostic factors and efficacy of cancer treatment. Once the guideline was defined, the document was submitted for review to 14 national and international independent reviewers, and to the medical committees of the 20 French Cancer Centres and, in particular the 4 which have expertise in pediatric cancer management, for agreement. RESULTS: The main recommendations for rhabdomyosarcoma management are: 1/ diagnosis is based on appropriate clinical and radiological findings; 2/ pathological and immunohistochemical studies are essential to confirm the diagnosis; 3/ surgery must be performed by an experienced surgeon. Surgery and radiotherapy must be as conservative as possible; 4/ therapeutic strategies for rhabdomyosarcoma depend on location and extends and are based on chemotherapy, surgery and radiotherapy. Inclusion of patients in SFOP, SIOP and IRS clinical trials is recommended; 5/ treatment of metastatic rhabdomyosarcoma is based on intensive chemotherapy, and surgery with or without radiotherapy; 6/ the management of non-rhabdomyosarcoma is based on the likelihood of sensitivity to chemotherapy; 7/ at the present time, there are no clear data on which to base guidelines for timing and duration of follow-up studies in these conditions.

Child↗

Social Security area population projections: 1987.

The following article, first published as Actuarial Study No. 99, describes the population projections that underlie the long-range cost estimates for the Old-Age, Survivors, and Disability Insurance (OASDI) program, which are included in the 1987 Report of the OASDI Board of Trustees. The projections start from a recent estimate of the population in the Social Security Area by age, sex, and martial status and from an estimate of existing marriages by age of husband and age of wife. Three separate projections, denoted Alternatives I, II, and III, are developed by analyzing historical data and making three different sets of assumptions about future net immigration, birth rates, and death rates.

Actuarial Analysis↗

[IDDM-Sardinia Project: a study model on the etiopathogenesis of insulin-dependent diabetes mellitus and other autoimmune pathologies. Gruppi di studio IDDM-Sardegna].

The "IDDM-Sardinia project" started in the beginning '90s and this main objective was, and still is, to clarify the epidemiological aspects of insulin-dependent diabetes mellitus in Sardinia, an island with a high incidence of the disease. Initially, the project included three main aims: 1) to continue monitoring the incidence of the disease and to design maps of geographical distribution of it in the island; 2) to study the pre-diabetes period, by assaying islet-related autoantibodies (ICA, GADA and IA-2icA), and to design models of prediction in a general population from a large cohort of 10,000 schoolchildren, and 3) to investigate the natural history of the disease by monitoring the appearance of islet-related autoantibodies in a cohort of 19,000 newborn. Most recently, new research lines branched from these main topics, and now the project is also investigating other autoimmune diseases, in particular coeliac disease and autoimmune thyroiditis. In this paper we still summarise and discuss the state-of-the-art of the whole project.

Adolescent↗

Cardiovascular disease risk factors and dental caries in adolescents: effect of a preventive program in Northern Sweden (the Norsjö project).

Since 1985 a 10 year prevention programme aiming to reduce cardiovascular diseases (CVD) has been running in the county of Västerbotten in Northern Sweden. The project started in Norsjö. The present investigation is a study on dietary intake, medical CVD risk factors and dental caries in five cross-sectional groups of 15-year-olds during 5 years (1987-1991) of the "Norsjö project". Most of the measured medical and dietary variables followed a similar trend, i.e. a positive trend during the first 3 years (1987-1989) and in the last 2 years (1990-1991) the averages returned towards baseline values. Dental caries prevalence followed a similar trend. Parental educational level did not have a major influence on diet or medical CVD risk factors, but higher caries scores were noted in adolescents with parents with "low" education compared with adolescents where the parents had higher educational levels. The results from the study also point to the fact that dental caries prevalence together with body mass index may indicate adolescents with CVD risk factors at unfavourable levels. Dietary counselling by dental personnel to adolescents with high caries and moderate obesity can be of advantage in reducing caries risk, as well as risk for development of CVD at higher ages.

Adolescent↗

"The history of health in Dayton": a community-academic partnership.

Academic institutions have always found it a challenge to persuade community members to participate in academic research projects. Starting an open dialogue is usually the critical first step. To begin this dialogue with community members in Dayton, Ohio, in 1999, staff from Wright State University decided to organize a community forum, "The History of Health in Dayton." The forum was intended as the first project of a new research organization, the Alliance for Research in Community Health (ARCH), established with federal funding from the Health Resources and Services Administration in 1998. ARCH was created as a bridge between the Department of Family Medicine of Wright State University School of Medicine and the Center for Healthy Communities, a health advocacy and service organization committed to health professions education. ARCH's mission is to improve the health of citizens of Dayton through research involving community participation. Through ARCH, community members help researchers define priorities, resolve ethical issues, refine procedures, and interpret results. Guidelines for participatory research, proposed by the National Primary Care Research Group in 1998 and adopted by the alliance, emphasize the importance of open dialogue among researchers, subjects, academics, and community members. The initial response to the forum was enthusiastic, with a majority of community residents expressing interest in attending future presentations.

Community Health Planning↗

Palliative Care Partnership: a successful model of primary/secondary integration.

The health reforms of the 1990s and early 21st century have seen unheralded change in the delivery of health services in New Zealand, and the concept of integration of primary and specialist or secondary services into a seamless health delivery service is one of the key planks of national and regional healthcare planning in New Zealand. This paper reports on a successful primary secondary integration project. Starting with commentary on the historical difficulties that acted as a catalyst to this initiative, it reports on the development process, how the model works in practice, and outlines some initial evaluation work done as part of its quality improvement component. Given the collaborative nature of this project and its scope across primary and specialist care sectors, the authors believe this model has implications and relevance across a wide spectrum of the New Zealand health service.

Communication↗

Medical aspects of the National Centre For Oncological Hadrontherapy (CNAO-Centro Nazionale Adroterapia Oncologica) in Italy.

More than 20 hadrontherapy centres are active in the world and about 40,000 patients have been treated, almost 4000 with ions. Physical selectivity and high relative biologic efficiency (RBE) represent the rationale for using ions in the treatment of tumours. The clinical results are very promising and justify the construction of new centres. We present the main characteristics of CNAO (Centro Nazionale Adroterapia Oncologica) and its possible integration in a nationwide network. The Italian project started in 1991 thanks to the activity of the TERA Foundation and was financed by the Italian Government in 2002. The CNAO will be built in Pavia to start clinical activity in 2007. The equipment will include a synchrotron and 3 treatment rooms mainly devoted to carbon ions but able to deliver also protons. The Centre should be able to deliver up to 20,000 fractions / year. The realization of CNAO is part of a more ambitious project to set up an integrated national network. The need of hadrontherapy centres is defined by epidemiological studies based on Italian tumour registries showing that almost 900 patients can be electively treated with protontherapy and about 10,000 could be included in clinical trials. Considering that ions could be used for radioresistant tumours that affect about 25,000 new patients/year, we estimate that 10-15%, i.e. 3000-4000 patients would benefit from ion therapy. The realization of a nationwide network possibly linked to a larger European network will be very helpful in making available hadrontherapy for a large part of the population.

Carbon↗

A clinical teaching project: examination of a clinical teaching model.

This project, started in 1985 by Dr Infante, is based on theory of the use of the clinical laboratory in nursing education. It fully recognizes the complementary roles of nursing education and nursing service by having practitioners participate as preceptors, role models, and mentors. Six clinical agencies participated in this innovative clinical teaching project with the goal of improving the effectiveness and efficiency of nursing education and nursing practice. It is hypothesized that the synchronization of clinical laboratory experiences with instruction in nursing theory and science and a closer collaboration among faculty, students, and nurse practitioners will give students an appropriate balance of academic and clinical practice perspectives and skills to prepare them effectively to meet the complex health care needs of patients. The subjects were 173 undergraduate baccalaureate nursing students enrolled in an upper-division generic program. For the purpose of testing Infante's clinical model, the students were randomly assigned to a control or experimental group for two successive incoming classes of nursing students. Each student's academic and clinical progression was monitored. Data were gathered using grade point average, a standardized test for nursing knowledge (Mosby Assesstest; Mosby, St Louis), college laboratory practicum, and simulated testing for clinical application skills.2+ Data were analyzed using independent t tests. The findings indicate that the students in the experimental group, who used the experimental clinical model, achieved higher grade point averages, higher scores on the Mosby Assesstest, and higher college laboratory practicum scores than the students in the control group. The findings support the need for further investigation of innovative clinical teaching models.

Clinical Competence↗

Managing externally financed projects: the Integrated Primary Health Care Project in Bolivia.

Bolivia is one of the poorest countries in Latin America. Health indicators are very poor, communicable diseases are prevalent and, coupled with malnutrition, remain the major killers of children under 5 years old. The Integrated Primary Health Care Project (PROISS) was a US$39 million project executed by the Ministry of Health (MOH), 50% financed by the World Bank and aimed at improving primary health care in the four largest Bolivian municipalities. The implementation of the project started in 1990 and ended in 1997. During implementation it went through three distinct phases: Phase 1 (1990-94) was a period characterized by conflict and confusion; Phase 2 (1995-mid-1996) documented major improvements in coverage and service quality; and Phase 3 (mid-1996-97) witnessed the decline of the project. This paper explores the factors that contributed to the success and the decline of the project, draws lessons for project managers and international agencies involved in the definition and implementation of social sector projects, and discusses the unlikelihood that externally financed projects can have a sustainable impact on the development of the health sector of recipient countries.

Bolivia↗

Acute decompression sickness in compressed air workers exposed to pressures below 1 bar in the Singapore Mass Rapid Transit project.

The Singapore Mass Rapid Transit (MRT) project started compressed air work in Oct 1984. Eleven km of underground tunnels out of 20 km were built using this method. Cases of decompression sickness (DCS) arising from compressed air work are rare with working pressures less than 1 bar gauge. However, there were 10 cases of DCS in the MRT project who were exposed to less than 1 bar pressure. The authors present their clinical features and attempt to explain the observations in relation to theories of bubble nuclei formation, gas loading and rate of decompression. The formation of bubble micronuclei are correlated with physical factors like heavy exertion, and the use of vibrating tools. The concept of extremely long tissue half-times in the absorption of nitrogen in the body is discussed as a contributory factor to the development of DCS under 1 bar.

Acute Disease↗

[Identification of common disease related genes by means of genome-wide SNP typing].

Determination of the human genome sequence will enable analysis of one entire set of genes (genome). Single nucleotide polymorphism (SNP) is now increasingly a focus of attention because of its important role in the genetic background of common disease. In Japan, we have identified 190,000 SNPs in two years and also established high-throughput genotyping system as part of SNP projects started in 2000. Using such infrastructure, we are now advancing to the next phase: identification of common disease-related genes by genome-wide association studies.

Crohn Disease↗

Feasibility of milk fluoridation and trends in dental caries of children in China.

The aim of the study is to investigate the feasibility of milk fluoridation as a vehicle for caries prevention, based on the current epidemiological status and its trends of dental caries in preschool children in the area of the Haidian District of Beijing, where the indications exist: Fluoride level in drinking water is low (0.2-0.3 ppm), and water fluoridation and other systemic uses of fluorides are unlikely. From 75.9 to 79.7% of 3-6-year-old children were identified as having high caries experience (dmft 4.29-4.35). It was found that 60% of the preschool children who attended kindergarten were 3-6 years old, and 40% of the 1-2-year-olds were living with their families. There is a local dairy to produce milk for the population living in this district. The amount of fresh milk produced daily is about 50,000-60,000 kg. A special kind of milk with vitamins A and D is also available for the preschool children. Data available from the Community MCH Centre indicated that the percentage of breast-feeding is 12% only. The first choice by parents for artificial feeding to the babies is fresh or powdered milk. Therefore, the breast-feeding project started in 1992. It is recommended that mothers' milk should be provided to the babies for at least four months after birth, when a specially prescribed milk for the babies, produced by the dairy, will be provided on a daily basis. The cost of milk is cheaper than others. In this connection, a five-year project on milk fluoridation as a pilot study at the community level for caries prevention of preschool children is now planned. The project is supported by BDMF, WHO, and Chinese MOPH.

Animals↗

Genome encyclopedias and their use for comparative analysis of Rhodobacter capsulatus strains.

This paper consists of two components: the use of gene encyclopedias in genomic studies and Rhodobacter capsulatus genome project. A survey of vectors used for encyclopedia construction includes a brief discussion of their relative advantages and limitations. Projects employing various methods of encyclopedia assembly including the comparison of restriction patterns, restriction maps, linking by hybridization, oligonucleotide fingerprinting, sequence tagged site (STS) fingerprinting and encyclopedias derived from genetic maps are listed and briefly described. The R. capsulatus SB 1003 genome project started with the construction of its cosmid encyclopedia, which comprises 192 cosmids covering the chromosome and the 134 kbp plasmid in strain SB 1003, with the exact map coordinates of each cosmid. In a pilot sequencing study, several cosmids were individually subcloned using the vector M13mp18 and merged into one 189 kbp contig. About 160 open reading frames (ORFs) identified by the CodonUse program were subjected to similarity searches. The biological functions of eighty ORFs could be assigned reliably using the WIT (what is there) genome investigation environment. Eighty percent of these recognizable ORFs were organized in functional clusters, which simplified assignment decisions and increased the strength of the predictions. A set of 26 genes for cobalamin biosynthesis, genes for polyhydroxyalkanoic acid metabolism, DNA replication and recombination, and DNA gyrase were among those identified. Recently, another 1.2 Mbp genome fragment of the Rhodobacter genome was sequenced using a slightly modified approach. These results together with some genome investigation tools, have been placed at our web site (http://capsulapedia.uchicago.edu). The sequence of R. capsulatus is expected to be completed by summer 1998. A project to construct a systematic set of deletion strains of R. capsulatus in order to assign functions to unknown ORFs has been started. Preliminary data demonstrate the extreme convenience of the unique gene transfer agent (GTA) system to perform such work.

Animals↗

Sociopolitical, economical and ethical issues in medicinal plant research.

Medicinal plant research may be pursued with several goals: the understanding of a native medical system, the elucidation of the rational basis for the medicinal use of a certain plant species, the development of low cost phytotherapeutics, the discovery of prototypic drugs, and so on. More often than not, the research project starts with the collection of indigenous medical knowledge in various parts of the world and generates a dissertation, a scientific paper or a drug. Usually, indigenous knowledge was crucial to the development of such products; nevertheless, indigenous groups tend not to benefit from the achievements of research. Ethnopharmacology involves a series of sociopolitical, economic and ethical dilemmas, at various levels. Most research projects involve more than one country (e.g., field work in a remote part of an underdeveloped country). Frequently host country scientists, visiting scientists, and informants disagree about these dilemmas. As a result, such research efforts are perceived as scientific imperialism; scientists are accused of stealing plant materials and appropriating traditional plant knowledge for financial profit and/or professional advancement. Many governments, as well as indigenous societies are increasingly reluctant to permit such research. Increasingly, funding for field work utilizing indigenous informants is coming from industry. Historically neither native populations nor host countries have shared to a significant extent the financial benefits from any drug that reaches the market. Unless these issues are amply discussed and fairy resolved, medicinal plant research runs the risk of serving ethically questionable purposes.

Economics↗

Au coeur de la vie: the Quebec Heart Health Dissemination Project.

"Au coeur de la vie" is a research project which aims to evaluate the impact of a heart health dissemination program on primary and secondary prevention practices in local community clinics in the province of Quebec, Canada. Because the project starts in 2001 and no data has been collected to date this paper presents the theoretical model, the objectives of the program, the description of the dissemination procedures, and a brief overview of the evaluation.

Diffusion of Innovation↗

Back to the future: community involvement in the Healthy Start Program.

This article discusses how community involvement is incorporated into Healthy Start, a major initiative to reduce infant mortality in selected communities with disproportionately high levels of infant mortality. Based on site visits to each of the fifteen original Healthy Start project areas, we discovered that two main community involvement strategies were used: a service consortium model and a community empowerment model. In the service consortium model, the community is involved primarily through a consortium of local providers, other professionals, and some governmental representatives who help to plan services. The community empowerment model involves the community by engaging neighborhood-based groups, contracting with community-based organizations, employing community residents as lay workers in the Healthy Start program, and creating other economic development initiatives. Important lessons drawn from this study are that the purpose and commitment to community involvement is not always clear; that it is difficult to involve community residents; that efforts to involve the community are extremely labor intensive; that given monetary incentives, it is easier to involve community providers than residents; that community involvement may conflict with efficient program operations; that increased community involvement may create program goals that differ from the program's original goals; and that community involvement may slow program development.

Community Health Centers↗