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Chronic obstructive pulmonary disease: a phenomenological study of patients' experiences.

AIM: The purpose of this study is to explore the experience of living with chronic obstructive pulmonary disease by investigating the subjective phenomenon as described by the patient. BACKGROUND: Chronic obstructive pulmonary disease is now recognized as one of the most common chronic respiratory diseases in the United Kingdom, with a high prevalence of morbidity and mortality. As the disease progresses, symptoms increase which gradually influence all aspects of the lives of those affected by it. METHOD: A phenomenological approach was identified as the most appropriate method to gain an understanding of living with chronic obstructive pulmonary disease. The data were obtained from 10 participants using unstructured interviews to capture detailed experiences verbatim. Analysis, based on the framework of Diekelmann et al. (The NLN Criteria for Appraisal of Baccalaureate Programs: A Critical Hermeneutic Analysis, NLN Press, New York, 1989), was employed to interpret the data and determine shared themes that evolved during the course of the research. RESULTS: The data revealed valuable insights, from a patient's perspective, into the impact chronic obstructive pulmonary disease had on their daily lives. The accounts obtained from participants, many of who had severe chronic obstructive pulmonary disease, illustrate the detrimental effects of this debilitating disease. Breathlessness was identified as the most troublesome symptom leading to anxiety, panic and fear. Participants also described feeling frustrated and tired because of their breathlessness, which led to loss of social activity. This also resulted in a loss of their role within the family including loss of intimacy in personal relationships. Despite this, half of the participants felt they had a fairly good quality of life. CONCLUSION: The use of phenomenology as a research methodology fulfilled the aim of gaining a greater understanding of the experiences of living with chronic obstructive pulmonary disease. It provided valuable insights into how patients view the overall impact and their subsequent degree of coping with chronic obstructive pulmonary disease from day to day. RELEVANCE TO CLINICAL PRACTICE: Whilst there is no cure for chronic obstructive pulmonary disease and medical interventions have limited effect, health professionals can do much to improve patient's symptoms and experiences of living with chronic obstructive pulmonary disease by listening to how their symptoms affect them and adapting coping strategies. It is hoped that the themes revealed in this study generate additional understanding and insight for future innovative practice.

Activities of Daily Living↗

Impacts of the Master Settlement Agreement on the tobacco industry.

OBJECTIVE: To assess effects of the Master Settlement Agreement (MSA) and the four individual state settlements on tobacco company decisions and performance. DESIGN: 10-K reports filed with the US Securities and Exchange Commission, firm and daily data from the Center for Research in Security Prices, stock price indices, market share and advertising data, cigarette export and domestic consumption data, and newspaper articles were used to assess changes before (1990-98) and after (1999-2002) the MSA was implemented. SUBJECTS: Five major tobacco manufacturers in the USA. MAIN OUTCOME MEASURES: Stockholder returns, operating performance of defendant companies, exports, market share of the original participants in the MSA, and advertising/promotion expenditures. RESULTS: Returns to investments in the tobacco industry exceeded returns from investments in securities of other companies, using each of four indexes as comparators. Domestic tobacco revenues increased during 1999-2002 from pre-MSA levels. Profits from domestic sales rose from levels prevailing immediately before the MSA. There is no indication that the MSA caused an increase in tobacco exports. Total market share of the original participating manufacturers in the MSA decreased. Total advertising expenditures by the tobacco companies increased at a higher rate than the 1990-98 trend during 1999-2002, but total advertising expenditures net of spending on coupons and promotions decreased. CONCLUSION: The experience during the post-MSA period demonstrates that the MSA did no major harm to the companies. Some features of the MSA appear to have increased company value and profitability.

Advertising↗

Progress in pediatric asthma surveillance I: the application of health care use data in Alameda County, California.

INTRODUCTION: The ability to conduct community-level asthma surveillance is increasingly crucial for public health programming and child health advocacy. We explored the potential and limitations of health care use records from both public and private sources for asthma surveillance in a California county. METHODS: We combined administrative patient record data from Kaiser Permanente of Northern California and Medi-Cal (the California Medicaid program) for Alameda County residents during 2001. We assessed the resulting data set for completeness, population representation, consistency with external data, and internal indicator consistency. RESULTS: Our resulting data set included records for 226,383 children younger than 18 years. Completeness of Medicaid data was affected by managed care market share, reducing our usable data set size to 176,789, approximately equal to one of every two children in the county or one of every 3 person-months. External data documenting hospitalization rates due to asthma were poorly correlated with hospitalization rates (r = 0.2120, P = .20) but highly correlated with emergency department visits (r = 0.8607, P <.001) in the resulting data set. High internal consistency of indicators suggested that the data set represented a broad spectrum of health care access and quality of care congruent with clinical aspects of the disease. CONCLUSION: The utility of these data is affected by logistical and administrative factors, including the health care payment structure and the market shares of care providers. These factors can be expected to similarly affect the utility of this approach in other counties. Our ability to generate county-level health statistics for comparison with other locations was limited, although the data set appeared well suited for within-county geographic analysis. In light of these findings, these data have the potential to expand the local health surveillance capacity of communities.

Adolescent↗

A simple mechanism for sharing and transporting medical digital case information across disparate computer language and data storage environments.

It is challenging to remotely share generic medical case information without an agreed upon definition of a medical digital teaching file (DTF). By utilizing an application of the extensible markup language (XML) called web-distributed data exchange (WDDX) along with an agreed upon WDDX structure, it is technically easy to share or syndicate medical case DTFs across computing environments that use different information models and computer languages. Thus, this easily implemented technology offers us an immediately available means to share and increase the value of scientific knowledge.

Computer Communication Networks↗

Expression Profiler: next generation--an online platform for analysis of microarray data.

Expression Profiler (EP, http://www.ebi.ac.uk/expressionprofiler) is a web-based platform for microarray gene expression and other functional genomics-related data analysis. The new architecture, Expression Profiler: next generation (EP:NG), modularizes the original design and allows individual analysis-task-related components to be developed by different groups and yet still seamlessly to work together and share the same user interface look and feel. Data analysis components for gene expression data preprocessing, missing value imputation, filtering, clustering methods, visualization, significant gene finding, between group analysis and other statistical components are available from the EBI (European Bioinformatics Institute) web site. The web-based design of Expression Profiler supports data sharing and collaborative analysis in a secure environment. Developed tools are integrated with the microarray gene expression database ArrayExpress and form the exploratory analytical front-end to those data. EP:NG is an open-source project, encouraging broad distribution and further extensions from the scientific community.

Gene Expression Profiling↗

Omics studies in Beh&#xe7;et's disease.

PURPOSE OF REVIEW: In this review, we aimed to highlight recent findings from "-omics" studies in Beh&#xe7;et's disease. RECENT FINDINGS: Recent genomic studies in Beh&#xe7;et's disease identified possible risk loci associated with Beh&#xe7;et's disease related uveitis, neurologic involvement and gastrointestinal involvement. Additionally, sex-specific genetic effects were determined in Beh&#xe7;et's disease. Transcriptomic analyses of immune cells in Beh&#xe7;et's disease revealed that key inflammatory pathways such as NF-&#x3ba;B and MAPK have roles in Beh&#xe7;et's disease pathogenesis. Proteomic studies have highlighted the role of immune cell derived extracellular vesicles and identified potential biomarkers for vascular involvement and examined HLA I-bound immunopeptidomes. Metabolomics studies are still limited, but recent research has pointed to alterations in fatty acid metabolism and lipid profiles in Beh&#xe7;et's disease patient. SUMMARY: Omics studies have gained importance in the field of Beh&#xe7;et's disease through the generation of large data sets and efforts to extend their application are intensifying. These studies can provide opportunities for understanding Beh&#xe7;et's disease pathogenesis when they lead to testable hypotheses. Current challenges include the choice of appropriately homogeneous patient and control groups, effective data management and sharing, high cost and a rapidly increasing gap between the wealth of observational data generated and the relative paucity of controlled experimental efforts that could lead to mechanistic understanding.

Behcet Syndrome↗

Towards shared patient records: an architecture for using routine data for nationwide research.

Ubiquitous information is currently one of the most challenging slogans in medical informatics research. An adequate architecture for shared electronic patient records is needed which can use data for multiple purposes and which is extensible for new research questions. We introduce eardap as architecture for using routine data for nationwide clinical research in a multihospital environment. eardap can be characterized as terminology-based. Main advantage of our approach is the extensibility by new items and new research questions. Once the definition of items for a research question is finished, a consistent, corresponding database can be created without any informatics skills. Our experiences in pediatric oncology in Germany have shown the applicability of eardap. The functions of our core system were in routine clinical use in several hospitals. We validated the terminology management system (TMS) and the module generation tool with the basic data set of pediatric oncology. The multiple usability depends mainly on the quality of item planning in the TMS. High quality harmonization will lead to a higher amount of multiply used data. When using eardap, special emphasis is to be placed on interfaces to local hospital information systems and data security issues.

Biomedical Research↗

Sharing the care of diabetic patients between hospital and general practitioners: does it work?

A randomized controlled trial was conducted to compare three forms of diabetes follow-up: (1) general practitioner care, (2) a system of care shared between the general practitioner (GP) and clinic and (3) conventional clinic care. Two hundred and six diabetic patients without significant diabetes-related or other medical complications were randomized to one of these follow-up systems. Metabolic control and blood pressure improved significantly and equally in all three groups (p < 0.05). The shared care group performed as well as or better than either of the other two groups in all other outcome measures. In particular, final attendance rates were 72% for shared care compared with only 35% for GP care and 53% for clinic care. Data collection rates for shared care were comparable with the clinic group for random blood glucose (88.9% vs 95.1%), weight (93.5% vs 98.3%), and blood pressure (94.8% vs 92.7%). Only in the case of glycosylated haemoglobin did shared care have poorer data collection (66.0% vs 98.4%). In all these parameters, except blood pressure, shared care out-performed the GP group. We conclude that with adequate support from and communication with hospital-based diabetes services, GPs are capable of providing care appropriate to the needs of uncomplicated diabetic patients.

Blood Pressure↗

Implementing an electronic medical record in a family medicine practice: communication, decision making, and conflict.

PURPOSE: Electronic medical record (EMR) systems offer substantial opportunities to organize and manage clinical data in ways that can potentially improve preventive health care, the management of chronic illness, and the financial health of primary care practices. The functionality of EMRs as implemented, however, can vary substantially from that envisaged by their designers and even from those who purchase the programs. The purpose of this study was to explore how unique aspects of a family medicine office culture affect the initial implementation of an EMR. METHODS: As part of a larger study, we conducted a qualitative case study of a private family medicine practice that had recently purchased and implemented an EMR. We collected data using participant observation, in-depth interviews, and key informant interviews. After the initial data collection, we shared our observations with practice members and returned 1 year later to collect additional data. RESULTS: Dysfunctional communication patterns, the distribution of formal and informal decision-making power, and internal conflicts limited the effective implementation and use of the EMR. The implementation and use of the EMR made tracking and monitoring of preventive health and chronic illness unwieldy and offered little or no improvement when compared with paper charts. CONCLUSIONS: Implementing an EMR without an understanding of the systemic effects and communication and the decision-making processes within an office practice and without methods for bringing to the surface and addressing conflicts limits the opportunities for improved care offered by EMRs. Understanding how these common issues manifest within unique practice settings can enhance the effective implementation and use of EMRs.

Communication↗

Discontinuation of cost sharing in Uganda.

OBJECTIVE: To assess the effects of ending cost sharing on use of outpatient services and how this was perceived by health workers and members of a health unit management committee. METHODS: From 10 districts across Uganda, 78 health facilities were selected. Attendance at these facilities was assessed for eight months before and 12 months after cost sharing ended. The data represented 1 966 522 outpatient visits. Perceptions about the impact of ending cost sharing were obtained from the 73 health workers and 78 members of the health unit management committee who were available. FINDINGS: With the end of cost sharing, the mean monthly number of new visits increased by 17 928 (53.3%), but among children aged <5 years the increase was 3611 (27.3%). Mean monthly reattendances increased by 2838 (81.3%) among children aged <5 years and 1889 (24.3%) among all people. Attendances for immunizations, antenatal clinics, and family planning all increased, despite these services having always been free. Health workers reported a decline in morale, and many health unit management committees no longer met regularly. CONCLUSION: Use of all services increased - even those that had never before been subject to fees. The loss of some autonomy by the health facility and diminished community governance of health facilities may have long term negative effects.

Attitude of Health Personnel↗

[Integrating obtained knowledge from transcriptome data by a new framework for data analysis].

Microarray analyses facilitate the investigation of quantitative information coded in the genome by measuring transcriptome, which records the decoded information from the genome. The state of a cell and differences from other states can be studied through genome information, by comparing one set of transcriptome data to other sets. Clearly, those data should be shared and compared with researchers, and the knowledge should be integrated. Unfortunately, at present data comparisons in microarray analyses are quite difficult; the accuracy as well as the reproducibility is low. The difficulties are originated from data analyses methods. Data comparison requires an intelligent framework, such as that discussed by philosopher Sir Karl R Popper. Frameworks for microarray analyses have been developed by many efforts of bioinformatitians. The frameworks currently used are being inspected and critically discussed. By checking the mathematical models that form the practical frameworks, arbitrariness such as the lack of falsifiability has been pointed out. The paradigm in this field of analyses is also criticized by disagreement with the scientific standard, and it is shown as the origin of errors in analyses. The excessive numbers of frameworks produced in an ad hoc manner has also been criticized, since the existence of so many allows researchers to select different frameworks, discussions beyond frameworks are always difficult. A new framework that uses a parametric model is introduced with an explanation of the bases of the framework and the process of testing. Additionally, differences of obtained results by these frameworks are presented using GeneChip data, in stability of log-ratio measurements and reproducibility of analyses. The possibility of artificial decoding of genome information by an extended framework is also discussed.

Gene Expression Profiling↗

Factors associated with women's adherence to mammography screening guidelines.

OBJECTIVE: To examine individual and environmental factors associated with adherence to mammography screening guidelines. DATA SOURCES: A unique data set that combines a national probability sample (1992 National Health Interview Survey); a national probability sample of mammography facility characteristics (1992 National Survey of Mammography Facilities); county-level data on 1990 HMO market share; and county-level data on the supply of primary care providers (1991 Area Resource File). STUDY DESIGN: The design was cross-sectional. DATA EXTRACTION/ANALYSIS: Data sets were linked to create an individual-level sample of women ages 50-74 (weighted n = 2,026). We used multipart, sequential logistic regression models to examine the predictors of having ever had mammography, having had recent mammography, and adherence to guidelines. We categorized women as adherent if they reported a lifetime number of exams appropriate for their age (based on screening every two years) and they reported having had an exam in the past two years. PRINCIPAL FINDINGS: Only 27 percent of women had the age-appropriate number of screening exams (range 16 percent-37 percent), while 59 percent of women had been screened within two years. Women were significantly more likely to adhere to screening guidelines if they reported participating with their doctor in the decision to be screened; were younger; had smaller families, higher education and income, and a recent Pap smear; reported breast problems; and lived in an area with a higher percentage of mammography facilities with reminder systems, no shortage of primary care providers, higher HMO market share, and higher screening charges. CONCLUSIONS: A small percentage of women adhere to screening guidelines, suggesting that adherence needs to become a focus of clinical, programmatic, and policy efforts.

Aged↗

Cultural universals: measuring the semantic structure of emotion terms in English and Japanese.

Research is presented on the semantic structure of 15 emotion terms as measured by judged-similarity tasks for monolingual English-speaking and monolingual and bilingual Japanese subjects. A major question is the relative explanatory power of a single shared model for English and Japanese versus culture-specific models for each language. The data support a shared model for the semantic structure of emotion terms even though some robust and significant differences are found between English and Japanese structures. The Japanese bilingual subjects use a model more like English when performing tasks in English than when performing the same task in Japanese.

Confidence Intervals↗

Interobserver and intraobserver reliability in the load sharing classification of the assessment of thoracolumbar burst fractures.

STUDY DESIGN: The Load Sharing Classification of spinal fractures was evaluated by 5 observers on 2 occasions. OBJECTIVE: To evaluate the interobserver and intraobserver reliability of the Load Sharing Classification of spinal fractures in the assessment of thoracolumbar burst fractures. SUMMARY OF BACKGROUND DATA: The Load Sharing Classification of spinal fractures provides a basis for the choice of operative approaches, but the reliability of this classification system has not been established. METHODS: The radiographic and computed tomography scan images of 45 consecutive patients with thoracolumbar burst fractures were reviewed by 5 observers on 2 different occasions 3 months apart. Interobserver reliability was assessed by comparison of the fracture classifications determined by the 5 observers. Intraobserver reliability was evaluated by comparison of the classifications determined by each observer on the first and second sessions. Ten paired interobserver and 5 intraobserver comparisons were then analyzed with use of kappa statistics. RESULTS: All 5 observers agreed on the final classification for 58% and 73% of the fractures on the first and second assessments, respectively. The average kappa coefficient for the 10 paired comparisons among the 5 observers was 0.79 (range 0.73-0.89) for the first assessment and 0.84 (range 0.81-0.95) for the second assessment. Interobserver agreement improved when the 3 components of the classification system were analyzed separately, reaching an almost perfect interobserver reliability with the average kappa values of 0.90 (range 0.82-0.97) for the first assessment and 0.92 (range 0.83-1) for the second assessment. The kappa values for the 5 intraobserver comparisons ranged from 0.73 to 0.87 (average 0.78), expressing at least substantial agreement; 2 observers showed almost perfect intraobserver reliability. For the 3 components of the classification system, all observers reached almost perfect intraobserver agreement with the kappa values of 0.83 to 0.97 (average, 0.89). CONCLUSIONS: Kappa statistics showed high levels of agreement when the Load Sharing Classification was used to assess thoracolumbar burst fractures. This system can be applied with excellent reliability.

Humans↗

DNA microarrays: applicability to renal physiology and disease.

The utilization of DNA microarray is increasing in all areas of medical research as evidenced by the exponential increase in the number of publications on MedLine. Improvements in DNA microarray technology and the bioinformatic techniques for data analysis continue to take place and result in improved reliability, reproducibility, and volume of data. Replicate analysis remains important in order to allow statistical examination of significance. Expression of key genes should also be confirmed by alternative techniques. Single microarray experiments yield such vast amounts of data that shortage of manpower is the limiting factor to progression of full scientific discovery. Sharing of microarray data on the internet and its distribution to a broader scientific community will help overcome this manpower shortage. Currently, DNA microarray technology serves as a research tool. Ultimately, microarray technology may be used widely in the clinical setting as fingerprinting of cells, tissue, and disease states, though more targeted strategies using a limited repertoire of genes may be most valuable.

Animals↗

Voices from the wilderness: an interpretive study describing the role and practice of outpost nurses.

OBJECTIVE: Outpost nurses function as primary care providers and in a community health nursing role, providing comprehensive primary health care in Canada's underserved northern communities. Little information exists regarding how outpost nurses meet this expectation. The purpose of this interpretive study was to address the following research questions: 1) How do experienced outpost nurses perceive and enact their role? 2) How are practical knowledge and clinical wisdom revealed in the practice narratives of experienced outpost nurses? METHODS: Purposive sampling was used to recruit the nine experienced outpost nurses who participated by sharing narratives of clinical practice. Data analysis was conducted in accordance with Benner's model of interpretive phenomenology. Paradigm and exemplary cases served to ground the interpretation in the data. RESULTS: Four themes emerged from the data: a) primary care competencies are fundamental to outpost practice, b) nurses evolve into the outpost role by learning community health competencies and adapting to context-specific practice issues, c) experienced outpost nurses build and maintain responsive relationships with communities, and d) experienced outpost nurses become comfortable with the autonomy and responsibility of practice. DISCUSSION: The findings of this study reinforce the complex nature of outpost nursing; it is an anomalous community health nursing role grounded in primary care competency. Interpretation of the data suggests that outpost nurses share practice domains and competencies with nurse practitioners. A better understanding of the outpost nursing role clarifies how nurses might better contribute to improving the health status of northern residents, helping northern communities become healthy communities.

Adult↗