Haemophilia registry of the Medical Committee of the Swiss Hemophilia Society. Update and annual survey 2010-2011.

The Haemophilia Registry of the Swiss Haemophilia Society was created in the year 2000. The latest records from October 31st 2011 are presented here. Included are all patients with haemophilia A or B and other inherited coagulation disorders (including VWD patients with R-Co activity below 10%) known and followed by the 11 paediatric and 12 adult haemophilia treatment or reference centers. Currently there are 950 patients registered, the majority of which (585) having haemophilia A. Disease severity is graded according to ISTH criteria and its distribution between mild, moderate and severe haemophilia is similar to data from other European and American registries. The majority (about two thirds) of Swiss patients with haemophilia A or B are treated on-demand, with only about 20% of patients being on prophylaxis. The figure is different in paediatrics and young adults (1st and 2nd decades), where 80 to 90% of patients with haemophilia A are under regular prophylaxis. Interestingly enough, use of factor concentrates, although readily available, is rather low in Switzerland, especially when taking the country's GDP into account: The total amount of factor VIII and IX was 4.94 U pro capita, comparable to other European countries with distinctly lower incomes (Poland, Slovakia, Hungary). This finding is mainly due to the afore mentioned low rate of prophylactic treatment of haemophilia in our country. Our registry remains an important instrument of quality control of haemophilia therapy in Switzerland.

Hemophilia Registry of the Medical Committee of the Swiss Hemophilia Society: Update and Annual Survey 2008.

The Swiss Haemophilia Registry of the Medical Committee of the Swiss Haemophilia Society was established in 2000. Primarily it bears epidemiological and basic clinical data (incidence, type and severity of the disease, age groups, centres, mortality). Two thirds of the questions of the WFH Global Survey can be answered, especially those concerning use of concentrates (global, per capita) and treatment modalities (on-demand versus prophylactic regimens). Moreover, the registry is an important tool for quality control of the haemophilia treatment centres. There are no informations about infectious diseases like hepatitis or HIV, due to non-anonymisation of the data. We plan to incorporate the results of the mutation analysis in the future.

Haemophilia registry of the medical committee of the Swiss Haemophilia Society. Update and annual survey 2009.

The Swiss Haemophilia Registry of the Medical Committee of the Swiss Haemophilia Society started in 1996 but was set as an internet-based, double password-protected facility in the year 2000. With the inclusion of patients' data from two new centres in 2009, we assume a coverage rate of about 90% of all patients with inherited bleeding disorders in our country. Data concerning the phenotype and genotype of the disorder, its severity, its therapy, the prevalence of inhibitors are readily available to the registered users, allowing quality control of haemophilia therapy at a national level, but also rapid care of the patient visiting the emergency room of another treatment centre. Basing on the available data, about two thirds of the WFH global survey can be answered; the mortality statistics shows that bleeding remains a cause of death in haemophiliacs, also in the 21th century. The Registry allows for comparisons with international datasets, especially with respect to treatment (prophylaxis vs. on-demand therapy), factor consumption and costs.

Factors influencing interprofessional practices of physiotherapists working in private settings with people with low back pain: a qualitative study

Purpose: Collaboration and interprofessional practices are highly valued in health systems everywhere, partly based on the rationale that they improve outcomes of care for people with complex health problems, such as low back pain. Research in the area of low back pain also supports the involvement of different health professionals in the interventions for people who present this condition. The aim of this studywas to identify factors influencing the interprofessional practices of physiotherapists working in private settings with people with low back pain. Relevance: Physiotherapists, like other health professionals, are encouraged to engage in interprofessional practices in their dailywork. However, to date, very little is known of their interprofessional practices, especially in private settings. Understanding physiotherapists' interprofessional practices and their influencing factors will notably advance knowledge relating to the organisation of physiotherapy services for people with low back pain. Participants: Participants in this study were 13 physiotherapists including 10 women and 3 men, having between 3 and 22 years of professional experience, and working in one of 10 regions of the Province of Quebec (Canada). In order to obtain maximal variation in the perspectives, participants were selected using a recruitment matrix including three criteria: duration of professional experience, work location, and physical proximity with other professionals. Methods: Thiswas a descriptive qualitative study using faceto- face semi-structured interviews as the main method of data collection. An interview guide was developed based on an evidence-derived frame of reference. Each interview lasted between 55 and 95 minutes and was transcribed verbatim. Analysis: Qualitative analyses took the form of content analysis, encompassing data coding and general thematic regrouping. NVivo version 8 was used to assist data organisation and analysis. Results: Multiple factors influencing the interprofessional practices of physiotherapists were identified. The main factors include the consulting person's health condition, the extent of knowledge on health professionals' roles and fields of practice, the proximity and availability of professional resources, as well as daily work schedules. Conclusions: Our findings highlight the influence of multiple factors on physiotherapists' interprofessional practices, including professional practice and organisational issues. However, further research on the interprofessional practices of physiotherapists is still required. Research priorities targeting the views of other health professionals, as well as those of services users, would enhance our comprehension of interprofessional practices of physiotherapists. Implications: This study provides new insights that improve our understanding of the interprofessional practices of physiotherapists working in private settings with people with low back pain, more specifically on the factors influencing these practices. Based on our findings, implementing changes such as improving current and future health professionals' knowledge of the fields and roles of other health professionals through training may contribute to positively influencing interprofessional practices. Keywords: Interprofessional practices; Private practice; Low back pain Funding acknowledgements: This research was supported in part by a B.E. Schnurr Memorial Fund Research Grant administered by the Physiotherapy Foundation of Canada, as well as from a clinical research partnership in physiotherapy between the Quebec Rehabilitation Research Network (REPAR) and the Ordre professionnel de la physiothérapie du Québec (OPPQ). KP received doctoral-level scholarships from the Canadian Institutes of Health Research (CIHR) and the Institut de recherche Robert-Sauvé en santé et en sécurité du travail (IRSST). CE Dionne is a FRSQ senior Research Scholar. Ethics approval: This project was approved by the ethics research committee of the Institut de réadaptation en déficience physique de Québec.

Fate of clinical research studies after ethical approval--follow-up of study protocols until publication.

BACKGROUND: Many clinical studies are ultimately not fully published in peer-reviewed journals. Underreporting of clinical research is wasteful and can result in biased estimates of treatment effect or harm, leading to recommendations that are inappropriate or even dangerous. METHODS: We assembled a cohort of clinical studies approved 2000-2002 by the Research Ethics Committee of the University of Freiburg, Germany. Published full articles were searched in electronic databases and investigators contacted. Data on study characteristics were extracted from protocols and corresponding publications. We characterized the cohort, quantified its publication outcome and compared protocols and publications for selected aspects. RESULTS: Of 917 approved studies, 807 were started and 110 were not, either locally or as a whole. Of the started studies, 576 (71%) were completed according to protocol, 128 (16%) discontinued and 42 (5%) are still ongoing; for 61 (8%) there was no information about their course. We identified 782 full publications corresponding to 419 of the 807 initiated studies; the publication proportion was 52% (95% CI: 0.48-0.55). Study design was not significantly associated with subsequent publication. Multicentre status, international collaboration, large sample size and commercial or non-commercial funding were positively associated with subsequent publication. Commercial funding was mentioned in 203 (48%) protocols and in 205 (49%) of the publications. In most published studies (339; 81%) this information corresponded between protocol and publication. Most studies were published in English (367; 88%); some in German (25; 6%) or both languages (27; 6%). The local investigators were listed as (co-)authors in the publications corresponding to 259 (62%) studies. CONCLUSION: Half of the clinical research conducted at a large German university medical centre remains unpublished; future research is built on an incomplete database. Research resources are likely wasted as neither health care professionals nor patients nor policy makers can use the results when making decisions.

The policy-making structure of European regulatory networks and the domestic adoption of standards

European regulatory networks (ERNs) constitute the main governance instrument for the informal co-ordination of public regulation at the European Union (EU) level. They are in charge of co-ordinating national regulators and ensuring the implementation of harmonized regulatory policies across the EU, while also offering sector-specific expertise to the Commission. To this aim, ERNs develop 'best practices' and benchmarking procedures in the form of standards, norms and guidelines to be adopted in member states. In this paper, we focus on the Committee of European Securities Regulators and examine the consequences of the policy-making structure of ERNs on the domestic adoption of standards. We find that the regulators of countries with larger financial industries tend to occupy more central positions in the network, especially among newer member states. In turn, network centrality is associated with a more prompt domestic adoption of standards.

Swiss adolescents' and adults' perceptions of cannabis use: a qualitative study.

Few studies have attempted to investigate the nature of adolescents' and adults' conceptions and perceptions of cannabis use. Our objectives were to explore adolescent and adult perception of use and misuse of cannabis, and their opinions and beliefs about the current legal context and preventive strategies. We used focus group discussions with four categories of stakeholders: younger (12-15 year old) adolescents, older (16-19 year old) adolescents, parents of teenagers and professionals working with young people. In some areas (legal framework, role of the media, importance of early preventive interventions), we found consensual attitudes and beliefs across the four groups of participants. In all four groups, participants did not have any consensual vision of the risks of cannabis use or the definition of misuse. In the area of the prevention of cannabis use/misuse, while parents focused on the potential role of professionals and the media, thus minimizing their own educational and preventive role, professionals stressed the importance of parental control and education. Within the Swiss context, we conclude there exists an urgent need for information and clarification of the issues linked with cannabis use and misuse directed at parents and professionals.

Swiss adolescents' and adults' perceptions of cannabis use : a qualitative study

Abstract Few studies have attempted to investigate the nature of adolescents' and adults' conceptions and perceptions of cannabis use. Our objectives were to explore adolescent and adult perception of use and misuse of cannabis, and their opinions and beliefs about the current legal context and preventive strategies. We used focus group dis¬cussions with four categories of stakeholders: younger (12-15 year old) adolescents, older (16-19 year old) adolescents, parents of teen¬agers and professionals working with young people. In some areas (legal framework, role of the media, importance of early preventive inter¬ventions), we found consensual attitudes and beliefs across the four groups of participants. In all four groups, participants did not have any consensual vision of the risks of cannabis use or the definition of misuse. In the area of the prevention of cannabis use/misuse, while parents focused on the potential role of professionals and the media, thus minimizing their own educa¬tional and preventive role, professionals stressed the importance of parental control and educa¬tion. Within the Swiss context, we conclude there exists an urgent need for information and clari¬fication of the issues linked with cannabis use and misuse directed at parents and professionals.

Multi-modal Change Detection, Application to the Detection of Flooded Areas: Outcome of the 2009-2010 data fusion contest

The 2009-2010 Data Fusion Contest organized by the Data Fusion Technical Committee of the IEEE Geoscience and Remote Sensing Society was focused on the detection of flooded areas using multi-temporal and multi-modal images. Both high spatial resolution optical and synthetic aperture radar data were provided. The goal was not only to identify the best algorithms (in terms of accuracy), but also to investigate the further improvement derived from decision fusion. This paper presents the four awarded algorithms and the conclusions of the contest, investigating both supervised and unsupervised methods and the use of multi-modal data for flood detection. Interestingly, a simple unsupervised change detection method provided similar accuracy as supervised approaches, and a digital elevation model-based predictive method yielded a comparable projected change detection map without using post-event data.

L'analyse des renvois régionaux et interrégionaux en pratique médicale ambulatoire. [Analysis of regional and interregional referrals in ambulatory medical practice].

This article examines, in two Swiss cantons, the interdependence from a medical care point of view of various regions (health planning zones in one canton, political districts in the other). The volume and the destination of patient referrals prescribed by physicians in ambulatory practice are analyzed. The available data (on 1609 referrals) were gathered by the practitioners themselves, during a National Ambulatory Medical Care Survey type study in February-March 1981, in which 203 physicians participated. Several indicators are proposed (including an integration coefficient and an attraction coefficient for each zone); they show marked differences among the regions. This dynamic approach, based on the effective behavior of physicians, appears to be of major interest for health planning purposes (as compared with the frequent practice to use mainly parameters in relation with the availability of care services--the "supply"--numbers of professionals and/or health facilities).

Cerebrospinal fluid in the diagnosis of multiple sclerosis: a consensus report.

The Committee of the European Concerted Action for Multiple Sclerosis (Charcot Foundation) organised five workshops to discuss CSF analytical standards in the diagnosis of multiple sclerosis. This consensus report from 12 European countries summarises the results of those workshops. It is hoped that neurologists will confer with their colleagues in clinical chemistry to arrange the best possible local practice. The most sensitive method for the detection of oligoclonal immunoglobulin bands is isoelectric focusing. The same amounts of IgG in parallel CSF and serum samples are used and oligoclonal bands are revealed with IgG specific antibody staining. All laboratories performing isoelectric focusing should check their technique at least annually using "blind" standards for the five different CSF and serum patterns. Quantitative measurements of IgG production in the CNS are less sensitive than isoelectric focusing. The preferred method for detection of blood-CSF barrier dysfunction is the albumin quotient. The CSF albumin or total protein concentrations are less satisfactory. These results must be interpreted with reference to the age of the patient and the local method of determination. Cells should be counted. The normal value is no more than 4 cells/microliters. Among evolving optional tests, measurement of the combined local synthesis of antibodies against measles, rubella, and/or varicella zoster could represent a significant advance if it offers higher specificity (not sensitivity) for identifying chronic rather than acute inflammation. Other tests that may have useful correlations with clinical indices include those for oligoclonal free light chains, IgM, IgA, or myelin basic protein concentrations.

The appropriate use of neurostimulation: avoidance and treatment of complications of neurostimulation therapies for the treatment of chronic pain.

INTRODUCTION: The International Neuromodulation Society (INS) has determined that there is a need for guidance regarding safety and risk reduction for implantable neurostimulation devices. The INS convened an international committee of experts in the field to explore the evidence and clinical experience regarding safety, risks, and steps to risk reduction to improve outcomes. METHODS: The Neuromodulation Appropriateness Consensus Committee (NACC) reviewed the world literature in English by searching MEDLINE, PubMed, and Google Scholar to evaluate the evidence for ways to reduce risks of neurostimulation therapies. This evidence, obtained from the relevant literature, and clinical experience obtained from the convened consensus panel were used to make final recommendations on improving safety and reducing risks. RESULTS: The NACC determined that the ability to reduce risk associated with the use of neurostimulation devices is a valuable goal and possible with best practice. The NACC has recommended several practice modifications that will lead to improved care. The NACC also sets out the minimum training standards necessary to become an implanting physician. CONCLUSIONS: The NACC has identified the possibility of improving patient care and safety through practice modification. We recommend that all implanting physicians review this guidance and consider adapting their practice accordingly.

Evaluation of risk perception related to drug use during pregnancy: a Swiss survey

Introduction Health care professionals' perception of risk mayimpact on therapeutic management of women during pregnancy.Since the thalidomide tragedy, the use of drugs during pregnancygenerates fear. This concern might affect the estimation of the riskassociated with drug intake during pregnancy, leading to prematurediscontinuation of a required treatment, superfluous anxiety orpointless termination of a desired pregnancy. Although data regardingthe security of drugs during pregnancy are still scarce, a few specializedinformation sources exist providing reliable recommendationsfor daily practice. This study aimed at characterizing therisk perception associated with drugs during pregnancy in a sample ofSwiss health care professionals.Materials & Methods An online French and German survey was sentby email to the Swiss professional societies of Pharmacists, Gynecologists,Mid-wives and Pediatricians. The questionnaire wasconstructed to assess (a) the characteristics of the population and theopinion of the professionals regarding the medication use pattern intheir pregnant patients, (b) to evaluate the sources of information usedduring their practice and finally (c) to assess their risk perceptionassociated with drugs during pregnancy. Results were analyzed bydescriptive statistics.Results A total of 1,310 questionnaires were collected (18% responserate). Most health care professionals believe that 30-60% of theirpregnant patients are taking at least one treatment during their pregnancyand that 80% are adherent to it. A large majority think,however, that women are anxious when they must take their medication.More than 80% of health professionals commonly use theSwiss Drug Reference Book (Compendium) to assess the risk associatedwith drugs during pregnancy, despite the uniformly low levelof credibility and utility they express about this reference. Except forsome gynecologists, the majority of professionals are not aware of ordo not use specialized books. The majority of participants thinkwrongly that more than 30% of drugs are teratogenic. About 20% ofthem are not aware of the risk associated with paracetamol intakeduring pregnancy. More than 70% agree that phytotherapeutic mixturesare not safer than conventional drugs, with the exception of midwiveswho tend to overestimate the safety of such drugs. With thenotable exception of gynecologists, the risk related to drug intake wasoverall overestimated.Discussion & Conclusion Swiss professionals differ in their perceptionof the risk associated with drugs during pregnancy and tend tooverestimate it. The differences might be attributed to the level oftraining and awareness of specialized sources offering a realisticestimation of the risk. Further efforts are needed to expand thetraining and the tools for health care professionals to optimize druguse during pregnancy.

Colorectal cancer metastasis: the DNA repair inhibitor Dbait increases sensitivity to hyperthermia and improves efficacy of radiofrequency ablation.

PURPOSE: To assess the usefulness of combining hyperthermia with a DNA repair inhibitor (double-strand break bait [Dbait]) and its potential application to radiofrequency ablation (RFA) in a preclinical model of human colorectal cancer. MATERIALS AND METHODS: The local ethics committee of animal experimentation approved all investigations. First, the relevance was assessed by studying the survival of four human colorectal adenocarcinoma cell cultures after 1 hour of hyperthermia at 41°C or 43°C with or without Dbait. Human colon adenocarcinoma cells (HT-29) were grafted subcutaneously into nude mice (n = 111). When tumors reached approximately 500 mm(3), mice were treated with Dbait alone (n = 20), sublethal RFA (n = 21), three different Dbait schemes and sublethal RFA (n = 52), or a sham treatment (n = 18). RFA was performed to ablate the tumor center alone. To elucidate antitumor mechanisms, 39 mice were sacrificed for blinded pathologic analysis, including assessment of DNA damage, cell proliferation, and tumor necrosis. Others were monitored for tumor growth and survival. Analyses of variance and log-rank tests were used to evaluate differences. RESULTS: When associated with mild hyperthermia, Dbait induced cytotoxicity in all tested colon cancer cell lines. Sublethal RFA or Dbait treatment alone moderately improved survival (median, 40 days vs 28 days for control; P = .0005) but combination treatment significantly improved survival (median, 84 days vs 40 days for RFA alone, P = .0004), with approximately half of the animals showing complete tumor responses. Pathologic studies showed that the Dbait and RFA combination strongly enhances DNA damage and coagulation areas in tumors. CONCLUSION: Combining Dbait with RFA sensitizes the tumor periphery to mild hyperthermia and increases RFA antitumor efficacy.

Meanings and perceptions of patient-centeredness in social work, nursing and medicine: A comparative study.

Answering patients' evolving, more complex needs has been recognized as a main incentive for the development of interprofessional care. Thus, it is not surprising that patient-centered practice (PCP) has been adopted as a major outcome for interprofessional education. Nevertheless, little research has focused on how PCP is perceived across the professions. This study aimed to address this issue by adopting a phenomenological approach and interviewing three groups of professionals: social workers (n = 10), nurses (n = 10) and physicians (n = 8). All the participants worked in the same department (the General Internal Medicine department of a university affiliated hospital). Although the participants agreed on a core meaning of PCP as identifying, understanding and answering patients' needs, they used many dimensions to define PCP. Overall, the participants expressed value for PCP as a philosophy of care, but there was the sense of a hierarchy of patient-centeredness across the professions, in which both social work and nursing regarded themselves as more patient-centered than others. On their side, physicians seemed inclined to accept their lower position in this hierarchy. Gieryn's concept of boundary work is employed to help illuminate the nature of PCP within an interprofessional context.