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Living with a chronic deteriorating disease: the trajectory with muscular dystrophy over ten years.

PURPOSE: The aim of the study was to elucidate experiences of living with muscular dystrophy in terms of consequences for activity over 10 years. METHODS: The study population was identified in a prevalence study in a county of Sweden. Forty-six persons of this cohort with MD were interviewed. A qualitative research approach was chosen. The World Health Organization's International Classification of Functioning, Disability and Health (ICF) was used for categorization. RESULTS: Nearly all the subjects experienced a deterioration of physical capacity. Most obvious were the restrictions on mobility and increased fatigue and feebleness. The persons described psychosocial consequences of the muscular dystrophy as well as stigma when the disability had become more obvious. In spite of reported distress several persons experienced better psychological adaptation over time. The image of the future was often dark but several focus on today and avoid thoughts about the future. ICF showed some limitation with regard to temporal aspects, emotions and the subjective perspective. CONCLUSIONS: The knowledge of the trajectory with MD is important in order to offer the best possible treatment and support. Repeated assessment by ICF can serve as a valuable source of such knowledge, and a development of the classification would increase its usefulness in future analysis of functioning and disability.

Accidental Falls↗

On semi-blind source separation using spatial constraints with applications in EEG analysis.

Blind source separation (BSS) techniques, such as independent component analysis (ICA), are increasingly being used in biomedical signal processing applications, including the analysis of multichannel electroencephalogram (EEG) and magnetoencephalogram (MEG) signals. These methods estimate a set of sources from the observed data, which reflect the underlying physiological signal generating and mixing processes, noise and artifacts. In practice, BSS methods are often applied in the context of additional information and expectations regarding the spatial or temporal characteristics of some sources of interest, whose identification requires complicated post-hoc analysis or, more commonly, manual selection by human experts. An alternative would be to incorporate any available prior knowledge about the source signals or locations into a semi-blind source separation (SBSS) approach, effectively by imposing temporal or spatial constraints on the underlying source mixture model. This work is concerned with biomedical applications of SBSS using spatial constraints, particularly for artifact removal and source tracking in EEG analysis, and provides definitions of different types of spatial constraint along with general guidelines on how these can be implemented in conjunction with conventional BSS methods.

Algorithms↗

A Critical Assessment of Evidence-Based Design's Knowledge Base and Inspiration: A Systematic Review.

PurposeThis study examines Evidence-Based Design (EBD) as an epistemological framework for guiding design research and practice, with a particular focus on its reliance on Evidence-Based Medicine (EBM) as a source of methodological inspiration.BackgroundOver the past two decades, EBD has been promoted as a way to strengthen design processes through the systematic use of scientific evidence. Its relationship to EBM, however, remains conceptually ambiguous: EBD draws legitimacy from EBM's hierarchical conception of "best evidence" while at the same time acknowledging the specificities of design practice, which do not easily fit such a model.MethodologyA systematic review was conducted on 31 publications in the design research literature that explicitly address the tension surrounding EBD's conception of "best evidence." The criticisms raised were coded and analyzed by main topics and subtopics.ResultsThe review highlights several reasons why EBM's hierarchical view of "best evidence" is an unsuitable epistemological foundation for EBD. It imposes scientifically inappropriate and practically ineffective methodological standards, devalues important sources of design knowledge, and fails to address central epistemic challenges intrinsic to design processes.ConclusionsBy bringing together critical yet fragmented insights from the literature, this study argues for the development of an updated epistemological framework for EBD. Constructing this framework will require sustained interdisciplinary dialogue between design research and philosophy of science.

Humans↗

Folic acid campaign and evaluation--southwestern Virginia, 1997-1999.

A needs assessment conducted in rural southwestern Virginia in 1996 indicated higher rates of birth defects in that region than in the entire state. In response to these findings, in January 1997 the regional perinatal council conducted a community folic acid information campaign designed to raise awareness about the 1992 Public Health Service recommendation that all women who are capable of becoming pregnant consume 400 microg (0.4 mg) of the B vitamin folic acid every day to decrease their risk for having a pregnancy affected with spina bifida or other neural tube defects (NTDs). This report describes the information campaign and the findings from precampaign and postcampaign surveys, which showed a significant increase in reported awareness and knowledge of the benefits of folic acid and reported knowledge about the sources of folic acid.

Adolescent↗

Adaptive interface for personalizing information seeking.

An adaptive interface autonomously adjusts its display and available actions to current goals and abilities of the user by assessing user status, system task, and the context. Knowledge content adaptability is needed for knowledge acquisition and refinement tasks. In the case of knowledge content adaptability, the requirements of interface design focus on the elicitation of information from the user and the refinement of information based on patterns of interaction. In such cases, the emphasis on adaptability is on facilitating information search and knowledge discovery. In this article, we present research on adaptive interfaces that facilitates personalized information seeking from a large data warehouse. The resulting proof-of-concept system, called source recommendation system (SRS), assists users in locating and navigating data sources in the repository. Based on the initial user query and an analysis of the content of the search results, the SRS system generates a profile of the user tailored to the individual's context during information seeking. The user profiles are refined successively and are used in progressively guiding the user to the appropriate set of sources within the knowledge base. The SRS system is implemented as an Internet browser plug-in to provide a seamless and unobtrusive, personalized experience to the users during the information search process. The rationale behind our approach, system design, empirical evaluation, and implications for research on adaptive interfaces are described in this paper.

Data Display↗

Accessing oncology information at the point of care: experience using speech, pen, and 3-D interfaces with a knowledge server.

Oncologists' information needs arise at diverse times and settings. For example: "Is superior vena cava syndrome a medical emergency?" Our collaborative group is developing a system that supports an interface with combinations of spoken, gestural, and simulated three-dimensional manipulation to help an oncologist focus on the information need, not the system. The system requires a small amount of input from the oncologist, and then anticipates what information is pertinent to the patient at hand, based on the sources it has available. The system makes use of a "Knowledge Server" to find relevant information. The Knowledge Server uses selected data for the particular patient from a Computer-based Patient Record (CPR) to provide context for the information needs. The Knowledge Server leverages the Unified Medical Language System (UMLS) resources as well as relevant communications standards. A layered, interaction protocol is used to help manage the fulfillment of information needs. Each of the oncology knowledge sources is transformed into a uniform representation that utilizes both its formal schema (e.g., its table of contents) and its concepts and words indexed through the UMLS Metathesaurus. Our focus on the appropriate use of information from a CPR, and on anticipating oncologists' information needs, resulted from our study of several longitudinal patient scenarios. We believe that our use of scenario-based design techniques will help to ensure the system's success.

California↗

Multivariate statistical and GIS-based approach to identify heavy metal sources in soils.

The knowledge of the regional variability, the background values and the anthropic vs. natural origin for potentially harmful elements in soils is of critical importance to assess human impact and to fix guide values and quality standards. The present study was undertaken as a preliminary survey on soil contamination on a regional scale in Piemonte (NW Italy). The aims of the study were: (1) to determine average regional concentrations of some heavy metals (Cr, Co, Ni, Cu, Zn, Pb); (2) to find out their large-scale variability; (3) to define their natural or artificial origin; and (4) to identify possible non-point sources of contamination. Multivariate statistic approaches (Principal Component Analysis and Cluster Analysis) were adopted for data treatment, allowing the identification of three main factors controlling the heavy metal variability in cultivated soils. Geostatistics were used to construct regional distribution maps, to be compared with the geographical, geologic and land use regional database using GIS software. This approach, evidencing spatial relationships, proved very useful to the confirmation and refinement of geochemical interpretations of the statistical output. Cr, Co and Ni were associated with and controlled by parent rocks, whereas Cu together with Zn, and Pb alone were controlled by anthropic activities. The study indicates that background values and realistic mandatory guidelines are impossible to fix without an extensive data collection and without a correct geochemical interpretation of the data.

Environmental Monitoring↗

A general method for the unbiased improvement of solution NMR structures by the use of related X-ray data, the AUREMOL-ISIC algorithm.

BACKGROUND: Rapid and accurate three-dimensional structure determination of biological macromolecules is mandatory to keep up with the vast progress made in the identification of primary sequence information. During the last few years the amount of data deposited in the protein data bank has substantially increased providing additional information for novel structure determination projects. The key question is how to combine the available database information with the experimental data of the current project ensuring that only relevant information is used and a correct structural bias is produced. For this purpose a novel fully automated algorithm based on Bayesian reasoning has been developed. It allows the combination of structural information from different sources in a consistent way to obtain high quality structures with a limited set of experimental data. The new ISIC (Intelligent Structural Information Combination) algorithm is part of the larger AUREMOL software package. RESULTS: Our new approach was successfully tested on the improvement of the solution NMR structures of the Ras-binding domain of Byr2 from Schizosaccharomyces pombe, the Ras-binding domain of RalGDS from human calculated from a limited set of NMR data, and the immunoglobulin binding domain from protein G from Streptococcus by their corresponding X-ray structures. In all test cases clearly improved structures were obtained. The largest danger in using data from other sources is a possible bias towards the added structure. In the worst case instead of a refined target structure the structure from the additional source is essentially reproduced. We could clearly show that the ISIC algorithm treats these difficulties properly. CONCLUSION: In summary, we present a novel fully automated method to combine strongly coupled knowledge from different sources. The combination with validation tools such as the calculation of NMR R-factors strengthens the impact of the method considerably since the improvement of the structures can be assessed quantitatively. The ISIC method can be applied to a large number of similar problems where the quality of the obtained three-dimensional structures is limited by the available experimental data like the improvement of large NMR structures calculated from sparse experimental data or the refinement of low resolution X-ray structures. Also structures may be refined using other available structural information such as homology models.

Algorithms↗

Factors affecting condom use among senior secondary school pupils in South Africa.

OBJECTIVES: The aim of the study was to investigate factors affecting condom use among senior secondary school pupils in South Africa. Objectives were to identify the sociodemographic characteristics and sexual history, knowledge about correct condom use, source of condom information, AIDS health beliefs, self efficacy of condom use, correlates and predictors of condom use in Grade 12 students. DESIGN: Cross sectional survey. SETTING: 460 Grade 12 secondary school pupils from three rural schools. SUBJECTS: The sample included 460 Grade 12 secondary school pupils, 170 (37%) males and 290 (63%) females in the age range of 16 to 30 years (mean age 19.7 yrs, SD = 2.5). MAIN OUTCOME MEASURES: Self reported sexual activity and condom use (12 items); source of 'condom' information (12 items); knowledge of correct condom use (10 items); a 16 item AIDS Health Belief Scale and a 28 item Condom Use Self-Efficacy Scale. RESULTS: About half of those sexually active (52.6% males and 40.5% females) reported never having used condoms. About 90% levels of correct answers on condom knowledge were found for the items of "protection against AIDS" and "expire date of condoms". Knowing someone with HIV/AIDS was related to current condom use and a history of STD with lifetime condom use. The four AIDS beliefs sub-scales were all related to self efficacy of condom use. Behavioural norm to use condoms, attitudes towards condom use, normative beliefs to use of condoms and subjective norm to use condoms were all related to condom use intention. Normative beliefs and subjective norms to use condoms were both negatively related with lifetime condom use, current condom use, and self efficacy in condom use. Normative beliefs, attitudes and subjective norms about condoms predicted condom use intention, AIDS susceptibility and AIDS benefits predicted condom use with last sexual partner, and AIDS benefits and AIDS barriers predicted condom use intention. CONCLUSION: Findings have relevant implications and are discussed in the context of developing an educational or intervention programme.

Adolescent↗

An information extraction and representation system for rapid review of the biomedical literature.

With the rapid expansion of scientific research, the ability to effectively find or integrate new domain knowledge in the sciences is proving increasingly difficult. The development of methods and tools for assisting researchers to effectively ex-tract problem-oriented knowledge from heterogeneous and massive information sources, and for using this knowledge in problem-solving is one of the most fundamental research directions for the information and computer sciences today. There is a need for new tools to support more precise identification of relevant research articles and provide visual clues regarding relationships among the document sets. We present the Telemakus system in which aggregated citation information and extracted research findings are displayed in a schema-based document surrogate and an interactive mapping tool provides graphical displays of research inter-relationships from documents across a domain. This system is an innovative approach to creating useful and precise document surrogates and may re-conceptualize the way we currently represent, retrieve, and assimilate research findings from the published literature.

Biomedical Research↗

Critical reflective inquiry for knowledge development in nursing practice.

This paper presents a method of inquiry which uses nurses' situated, individual instances of nursing practice as the basis for developing knowledge for nursing and improving practice. This method of inquiry is founded upon the ideas in action science and reflective practice, and critical philosophy. Nursing practice is viewed as a rich source of new knowledge as practitioners are engaged in creating as well as modifying knowledge to respond to specific clinical situations. At the same time, practitioners may be in practice without recognizing deficiencies or ineffectiveness. As a method to tap these two aspects of practice, the inquiry is designed to encompass three phases, i.e. descriptive, reflective and critical/emancipatory, and is oriented to provide understanding to practitioners of the nature and meaning of their own practice, to correct and improve practice through self-reflection and critique, and to generate models of 'good' practice and theories of application as well as to discover processes of practice as played out in clinical situations. This method of inquiry can be used by nurses and nursing students in collaboration with researches or mentors to develop nursing knowledge about practice, improve individual practice, and engage in shared learning.

Communication↗

Research applications of the Cambridge Structural Database (CSD).

Crystal structure data are of fundamental importance in a wide spectrum of scientific activities. This tutorial review summarises the principal application areas, so far, for the data from more than 300,000 crystal structures of small organic and metal-organic compounds that are stored in the Cambridge Structural Database (CSD). Direct use of the accumulated data is valuable in establishing standard molecular dimensions, determining conformational preferences and in the study of intermolecular interactions, all of which are crucial in structural chemistry and rational drug design. More recently, information derived from the CSD has been used to construct two dynamic libraries of structural knowledge: Mogul, which stores intramolecular information, and IsoStar, which stores information about intermolecular interactions. These electronic libraries provide information "at the touch of a button". In their turn, the libraries also serve as sources of structural knowledge for applications software that address specific problems in small-molecule and biological chemistry.

Journal Article↗

Physician knowledge and attitudes towards molecular genetic (DNA) testing of their patients.

OBJECTIVE: To better define the knowledge and attitudes of practicing physicians about genetics; specifically molecular genetics. Further, to examine differences between four practice specialties and to assess variables that affect both knowledge and attitudes. DESIGN: A mail-in survey was sent to a random sample of non-geneticist physicians, with a second copy sent to non-responders. Questions included sociodemographic variables, sources of current knowledge and education in genetics, clinical experience with genetic disease, self-confidence in providing genetic counseling, attitudes towards referring patients to a genetic center, awareness of molecular genetic testing and attitudes towards its use in clinical practice and population screening. SETTING: Responses were obtained from over 900 practicing physicians in the Canadian province of Ontario (population 10 million). Genetic services are provided through nine major and several outreach centers. Molecular diagnostic services are provided through six provincially funded laboratories. There are no direct costs to the patient for any genetic service. PARTICIPANTS: A random sample of family physicians, obstetricians, pediatricians and internists was surveyed from both private and hospital based practices. RESULTS AND CONCLUSION: Responses varied by specialty, years from graduation, gender, and type of practice. Pediatricians and obstetricians were more knowledgeable about genetics, had more interaction with genetic services and were more supportive of their utility. A major proportion of physicians continue to rely upon undergraduate and medical school courses for knowledge, and the specialties showed different preferences for seeking information. A majority of physicians considered their knowledge of genetics to be adequate, but a minority were confident to provide genetic counseling for simple genetic scenarios. Relatively few had actually made use of DNA diagnostic services and there was relatively poor knowledge of what services were available.

Adult↗

Knowledge of stroke in Hong Kong Chinese.

A random telephone survey on knowledge of stroke was conducted in 1, 238 Hong Kong Chinese. Most respondents realized that effective treatment was available, that stroke was preventable and that it could be fatal or disabling. Sudden unilateral limb weakness, sudden speech and language disturbances, and sudden vertigo and clumsiness were better recognized than other warning symptoms of stroke. A slightly better recognition of symptoms of stroke was seen in those with a belief of knowing about stroke, providing a correct description of stroke, those with a positive household history of stroke and those with a better knowledge of potential risk factors. Most respondents would choose desirable actions if stroke was suspected in their family members or themselves. Friends and relatives, newspapers and magazines, and mass media provided the major sources of their knowledge.

Adolescent↗

Medico-social profile of male teenager STD patients attending a clinic in Pune.

A study of 250 male teenager STD cases was carried out to determine the association between certain medicosocial factors e.g. age, type of infection, educational status, source of infection, knowledge about mode of acquiring infection and prophylaxis etc. Salient findings of the study such as gonorrhoea being the commonest type of STD, curiosity being the main reason for first sexual exposure and prostitutes being the major source of infection have been highlighted in this communication.

Adolescent↗

Knowledge and attitude of healthy high school students toward bronchial asthma and asthmatic pupils.

One hundred sixteen healthy high school pupils were interviewed and completed a questionnaire concerning their knowledge about asthma and their attitude towards asthmatic peers. They were compared with 35 asthmatic pupils studying at the same school. The level of knowledge was quite satisfactory, with the knowledge of the asthmatic pupils being somewhat higher than that of the healthy pupils, but without statistical significance. There was a correlation with the age of the pupils in both groups (p < 0.0001). The source of pupils' knowledge came principally from the media (television and newspapers), the family (talking with parents), treating physicians, and school nurses. The healthy pupils displayed less tolerance toward the asthmatic disease and its limitations on activity than that displayed by the asthmatic pupils (p < 0.001). A correlation was found between the level of knowledge and attitude, with an increased level of knowledge implying a more tolerant attitude. A correlation was also found between tolerant attitudes and increasing age, increasing parental education, and the pupils' behavior marks. The recommendation of the survey is to improve the instruction regarding bronchial asthmatic diseases with classes taught by physicians or nurses. By increasing the knowledge of the healthy pupils at school, their attitudes will be more tolerant and positive toward the asthmatic pupils.

Adolescent↗

Intuition as authoritative knowledge in midwifery and homebirth.

As defined by Jordan (1992, 1993[1978]), authoritative knowledge motivates decision and action. Based on interviews with 22 white middle-class midwives in the United States conducted between 1992 and 1993, this article explores the inner knowing that constitutes a primary source of authoritative knowledge for homebirthers but is granted no authority in the realm of technomedicine. The purpose of this article is to call attention to these midwives' utilization of and reliance on intuition as a guide to action and decision making during homebirths. The midwife-interviewees are highly literate and competent in technological skills and biomedical diagnosis, and are keenly aware of the cultural and legal risks they run when they cannot justify their actions during a birth in logical, rational terms. Nevertheless, the deep value they place on connection, in the context of their holistic model of birth and health care, leads them to listen to and follow their "inner voice" during birth, rather than operating only according to protocols and standard parameters for "normal birth". The nature of intuition and the reasons for and consequences of the general devaluation of intuitive thinking by the wider society are also considered.

Authoritarianism↗

Usefulness and pitfalls of planar gamma-scintigraphy for measuring aerosol deposition in the lungs: a Monte Carlo investigation.

UNLABELLED: Planar gamma-scintigraphy is often used to quantify pulmonary deposition patterns from aerosol inhalers. The results are quite different from those obtained using 3-dimensional PET and SPECT. The purpose of this study was to characterize the effects of scatter and tissue attenuation on the distribution of radiolabeled aerosol as measured by planar scintigraphy using Monte Carlo simulations. This study also investigated the applicability of a few correction methods used in inhalation studies. METHODS: Body density maps were derived from CT scans. Regions of interest-lungs, major airways, and esophagus-were defined from the same CT volume. Two radioactivity source distribution patterns in the lung, uniform and nonuniform, were used. A Monte Carlo program, SIMIND, was used to generate anterior and posterior gamma-images of the composed inhalation distributions for 2 energy windows, photopeak (127-153 keV) and scatter (92-125 keV). The effects of scatter and attenuation were estimated on the basis of the imaging components separated from the simulation. A scatter correction method and 2 attenuation correction methods, all applied to inhalation scintigraphy, were evaluated using the simulated images. RESULTS: The amount of scatter ranges from 24% to approximately 29% in the lungs and from 29% to approximately 35% in the central (airway or esophagus) region on the planar images. Significant differences were found among regions and between source distributions (P < 0.05). The fraction k used for dual-energy-based scatter correction also varied and was found to be less than the commonly used k = 0.5. The simplified narrow-beam attenuation correction and the effective (broad-beam) correction methods were found to either under- or overcorrect the regional activities. CONCLUSION: The amount of scatter and tissue attenuation in the thorax region depends on source distribution and body attenuation. In applying planar scintigraphy for aerosol inhalation studies, it is difficult to obtain precise quantitative measurements because of the uncertainties associated with scatter and attenuation corrections. Accurate corrections require knowledge of both source and density distributions.

Administration, Inhalation↗