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PubMed1995

Pancreatic insufficiency and pulmonary disease in German and Slavic cystic fibrosis patients with the R347P mutation.

Cystic fibrosis (CF) is caused by mutations in the gene for the cystic fibrosis transmembrane conductance regulator (CFTR) that codes for a cAMP-regulated chloride channel. The R347P is a missense mutation located within the first membrane spanning domain (MSD1) of the CFTR protein. This mutation occurs with an overall worldwide frequency of about 0.2%. The patients, originally described with this mutation were compound heterozygotes with the delta F508 mutation and had a very mild course of CF, suggesting that R347P, similar to other missense mutations affecting the MSD1 domain, causes a mild phenotype. We report here a group of 19 CF patients with the R347P mutation of German, Bulgarian, Czech, and Slovak origin, including two homozygotes. Most patients presented with early disease onset, pancreas insufficiency (PI), and early pulmonary involvement, suggesting that this mutation can lead to a severe course of CF. Most R347P alleles in the group studied share a common polymorphic haplotype. In addition, these analyses gave evidence for recurrence of the mutation in two CF patients of German and Czech origin.

Cystic Fibrosis↗

PubMed2001

Parametric dependence of SAR on permittivity values in a man model.

The development and widespread use of advanced three-dimensional digital anatomical models to calculate specific absorption rate (SAR) values in biological material has resulted in the need to understand how model parameters (e.g., permittivity value) affect the predicted whole-body and localized SAR values. The application of the man dosimetry model requires that permittivity values (dielectric value and conductivity) be allocated to the various tissues at all the frequencies to which the model will be exposed. In the 3-mm-resolution man model, the permittivity values for all 39 tissue-types were altered simultaneously for each orientation and applied frequency. In addition, permittivity values for muscle, fat, skin, and bone marrow were manipulated independently. The finite-difference time-domain code was used to predict localized and whole-body normalized SAR values. The model was processed in the far-field conditions at the resonant frequency (70 MHz) and above (200, 400, 918, and 2060 MHz) for E orientation. In addition, other orientations (K, H) of the model to the incident fields were used where no substantial resonant frequency exists. Variability in permittivity values did not substantially influence whole-body SAR values, while localized SAR values for individual tissues were substantially affected by these changes. Changes in permittivity had greatest effect on localized SAR values when they were low compare to the whole-body SAR value or when errors involved tissues that represent a substantial proportion of the body mass (i.e., muscle). Furthermore, we establish the partial derivative of whole-body and localized SAR values with respect to the dielectric value and conductivity for muscle independently. It was shown that uncertainties in dielectric value or conductivity do not substantially influence normalized whole-body SAR. Detailed investigation on localized SAR ratios showed that conductivity presents a more substantial factor in absorption of energy in tissues than dielectric value for almost all applied exposure conditions.

Absorption↗

PubMed2005

Molecular evaluation of CFTR sequence variants in male infertility of testicular origin.

Although the involvement of the CFTR gene has been well established in congenital agenesia of vas deferens, its role in non-obstructive (NOb) infertility is still a matter of debate. In order to definitively define the involvement of the CFTR gene in spermatogenic impairment and a potential synergistic contribution to known genetic and clinical factors, genetic variants in the entire coding sequence and the immediately flanking regions of the CFTR gene, along with a thorough clinical evaluation, were analysed in 83 NOb infertile patients and 87 clinically well-defined fertile individuals as controls. The results of our study showed no statistical difference between CFTR carrier frequency in the infertile and fertile population. Specifically, the IVS8-6(5T) allele carrier frequency was similar in NOb infertile patients when compared with fertile men, but it is noteworthy that, when fertile men were classified into having optimal and suboptimal fertility, no 5T allele was found among the 35 men with optimal fertility parameters. In conclusion, extensive CFTR analysis in infertile individuals and fertile population as adequate control definitively excludes the involvement of the CFTR gene variants in sperm production and stresses the importance of carefully identifying those individuals with obstructive defects, in whom CFTR screening will be beneficial.

Base Sequence↗

PubMed1991

Cystic fibrosis gene expression is not correlated with rectifying Cl- channels.

Cystic fibrosis (CF) involves a profound reduction of Cl- permeability in several exocrine tissues. A distinctive, outwardly rectifying, depolarization-induced Cl- channel (ORDIC channel) has been proposed to account for the Cl- conductance that is defective in CF. The recently identified CF gene is predicted to code for a 1480-amino acid integral membrane protein termed the CF transmembrane conductance regulator (CFTR). The CFTR shares sequence similarity with a superfamily of ATP-binding membrane transport proteins such as P-glycoprotein and STE6, but it also has features consistent with an ion channel function. It has been proposed that the CFTR might be an ORDIC channel. To determine if CFTR and ORDIC channel expression are correlated, we surveyed various cell lines for natural variation in CFTR and ORDIC channel expression. In four human epithelial cell lines (T84, CaCo2, PANC-1, and 9HTEo-/S) that encompass the full observed range of CFTR mRNA levels and ORDIC channel density we found no correlation.

Base Sequence↗

PubMed1996

Periodontal conditions in 15-19-year-old Chileans.

A CPITN survey involving Chilean high school students aged 15-19 years was conducted. A random stratified sample by age, sex and socio-economic status was obtained, and comprised 2400 subjects. The total prevalence of periodontal disease (Code 3+4) was 10.49 per cent. There was a significant difference in the prevalence of periodontal disease in males (9 per cent) compared to females (12.16 per cent). The prevalence of periodontal disease was higher in students of low socio-economic status (15.87 per cent) than in students of middle (9.22 per cent) and high socio-economic status (8.93 per cent). The periodontal treatment needs were also higher for students of low socio-economic status than for students of the highest family income. The prevalence of periodontal disease and treatment needs found in Chilean students showed that virtually this entire population needs oral hygiene instruction, that 70 per cent need scaling, and that 10.49 per cent need complex periodontal treatment.

Adolescent↗

PubMedDate not supplied

Factors influencing the uptake of technologies to minimize perioperative allogeneic blood transfusion: an interview study of national and institutional stakeholders.

BACKGROUND: Alternatives to allogeneic blood transfusion exist and are being used to varying extents in Australian hospitals. Evidence on effectiveness and cost-effectiveness is generally inconclusive and provides a suboptimal basis for policy development. AIM: To describe the influences on uptake of transfusion technologies as perceived by national and institutional stakeholders. METHODS: Qualitative interview study. Interview transcripts were coded and analysed independently by at least two researchers. Participants had opportunity to comment on their transcript and the manuscript. RESULTS: A total of 71 interviews were conducted with representatives of the media, specialist medical societies, consumer special interest groups, the Australian Red Cross Blood Service (ARCBS), government, private health insurers, technology manufacturers, prominent clinicians in the area and a sample of clinicians drawn from hospitals with variable use of blood-saving technologies. Technical advances and acceptance of lower transfusion triggers were identified as the main influences on the decrease in use of allogeneic blood transfusion in the past decade. Participants indicated that patients were most aware and supportive of autologous predonation. Participants noted that 'enthusiasts' were involved in educating about the need for alternatives, negotiating resourcing and maintaining the use of a technology. Funding mechanisms were seen as main barriers to use of alternatives. A discrepancy was noted in the rigour of evaluation and regulation of pharmaceuticals and devices/procedures. CONCLUSIONS: Uptake of blood transfusion technologies by institutions was dependent mostly on funding arrangements and the presence of an 'enthusiast'. Critical review of the evidence for effectiveness or cost-effectiveness of these technologies was rarely mentioned. Opportunities exist for evidence-based medicine principles to play a greater role in policy decisions in this area.

Blood Donors↗

PubMedDate not supplied

Factors influencing teenage mothers' participation in unprotected sex.

OBJECTIVE: To study the values, beliefs, and lived experiences of 8 teenage mothers who participated in unprotected sex at the time their babies were conceived, in order to enhance understanding of adolescent sexual behavior from a nursing science perspective. DESIGN: A qualitative, heuristic approach that subscribed to the basic tenets of descriptive phenomenology, in which teenagers were allowed to discuss in their own words the sentiments, opinions, ideologies, and intentions that affected their sexual decision-making. SETTING: Data collection consisted of a series of audiotaped interviews conducted by the researcher in the participants' homes over an 8-week period from November 1997 through January 1998. PARTICIPANTS: A convenience sample of 8 teenage mothers who met the inclusion criteria for having participated in unprotected sex at the time of conception, recruited from a facility specializing in education, support, and intervention for teenage parents. MAIN OUTCOME MEASURES: Thematic analysis of transcribed text began once the first interview was completed and continued throughout the data collection process. The process included open coding of key words and phrases, bracketing out conventional knowledge, and immersion in the data in order to identify prevalent and recurring themes. RESULTS: Results are reported in terms of the six prevalent themes that emerged from the interview data relevant to factors which contributed to the teenagers' participation in unprotected sexual intercourse: Desiring Pregnancy, Handing It Over to Fate, Lacking a Plan, Doubting the Chances, Fearing Harm, and Fearing Loss. CONCLUSIONS: Key themes identified in this study represent a foundational step in achieving a more cogent view of the issues involved in adolescent sexual decision-making. Awareness of these experiences and intentions can be used to enhance meaningful interaction between adolescents and the health care system as well as to serve as a resource in the development and implementation of programs designed to prevent adolescent pregnancy. Further studies are required before specific practice applications can be identified.

Adolescent↗

PubMed2003

Informed consent for enrolling minors in genetic susceptibility research: a qualitative study of at-risk children's and parents' views about children's role in decision-making.

PURPOSE: To better understand the process by which families at increased risk of disease would decide to enroll their children in genetic susceptibility research in order to develop recommendations regarding the informed consent process by which at-risk children are enrolled in such research in the future [corrected]. METHODS: Parents and children (ages 10-17 years) from families at increased risk for heart disease (n = 21 dyads) or breast cancer (n = 16 dyads) participated in two face-to-face, audio-taped, semi-structured interviews: Initial interviews were conducted with parents and children separately, and follow-up family interviews were conducted 1 year later. Interview transcripts were coded based on common themes. RESULTS: Families vary in the stage at which, and degree to which, children would be involved in decision-making about research participation. In general, the older/more mature the child, the less risky the research and the more open the communication style, the greater the likelihood that decisions would be made jointly. Most children wanted some parental input, but still thought the final decision should be theirs. Most parents would want to make the initial decision about whether it would be reasonable to consider enrolling their child in the research being proposed, but none opposed the child having some time alone with the researcher. All parents and children in our study placed extreme importance on not forcing children to participate in nontherapeutic research if they do not want to. CONCLUSIONS: Decision-making about enrolling children in genetic susceptibility research should be based on an informed consent process that (a) gives parents and children sufficient opportunity to ask questions of the researcher(s) and to communicate with one another, and (b) gives children the opportunity to exercise their right to refuse participation without parental influence. This process should be tailored to the child's maturity level and style of communication in the family.

Adolescent↗

PubMed2000

How clinical teachers perceive the doctor-patient relationship and themselves as role models.

PURPOSE: Teachers must be good role models. In order to act the part, however, they must reflect on and articulate the attitudes and behaviors they wish to convey. The aim of this study was to describe how clinicians who teach clerks and residents represent the doctor-patient relationship and how they see themselves as role models for this relationship. METHOD: In the fall of 1997, 28 clinical teachers in family medicine and various medical and surgical specialties at Laval University Faculty of Medicine participated in individual semistructured interviews regarding their perceptions of the doctor-patient relationship and how it is taught. The interviews were conducted by a trained research assistant and the content of the interviews was coded by three independent observers, who then performed a qualitative analysis. RESULTS: The clinical teachers identified competencies associated with the doctor-patient relationship that differed in complexity and specificity. Paramount among these competencies were the ability to conduct interviews effectively and politely, the ability to understand and involve the patient, and, in some cases, the ability to handle emotionally-charged situations. The clinical teachers tended to demand more of their students in doctor-patient relationships than they did of themselves. Lack of time and a negative attitude toward the doctor-patient relationship, on the part of both teachers and students, were obstacles to teaching and learning this essential competency, even to the point of making it difficult for teachers to demonstrate and supervise these competencies during their daily clinical activities. CONCLUSIONS: Most of the teachers had difficulty describing situations or behaviors in which they modeled the doctor-patient relationship. Being a role model requires a fairly precise idea of what one is modeling and accomplishing, and what one wants trainees to understand about the relationship. Efforts must be made to help clinical teachers to integrate the doctor-patient relationship into their clinical supervision and to provide them with tools to demonstrate this relationship effectively.

Attitude of Health Personnel↗

PubMed2004

Evidence-based priority-setting: what do the decision-makers think?

OBJECTIVES: Resource scarcity dictates the need for health organisations to set priorities. Although such activity should be based, at least in part, on evidence, there are limited examples in the literature of decision-makers reflecting on their use of evidence in priority-setting. METHODS: A participatory action-research project was conducted in a single health authority in Alberta. It included in-depth interviews and focus groups with senior decision-makers both before and after development and implementation of a macro-level priority-setting framework (programme budgeting and marginal analysis, PBMA). Data were thematically coded and information on the use of evidence in priority-setting is reported. RESULTS: Barriers to the use of evidence in priority-setting identified by decision-makers included crisis-orientated management, time constraints and a lack of skills. Decision-makers suggested using a mix of 'soft' and 'hard' forms of evidence in priority-setting. Following PBMA implementation, decision-makers wanted better information on capacity to benefit, but preferred to do this pragmatically from multiple sources of information rather than using a single metric. CONCLUSION: In examining the perspectives of decision-makers in using evidence to support priority-setting, valuable information was derived which should provide insight for such processes in other jurisdictions. The main finding of a desire for pragmatic assessment of benefit is informative for those involved in both decision-making and research.

Alberta↗

PubMed1998

An association between a microsatellite polymorphism at the DRD5 gene and the liability to substance abuse: pilot study.

We have conducted a population-based association study of substance abuse and a microsatellite at the dopamine D5 receptor locus (DRD5) in a sample of European-American males and females with substance dependence (SA) or without any psychiatric disorder. Overrepresentation of the most frequent allele (148 bp) was found in males in the SA group (OR = 2.2, P = .02); this finding was reproduced in females (OR = 5.4, p < .001). The difference in the frequencies of this allele between SA males and SA females was statistically significant. The genotype coded in accordance with the dose of this allele correlated with substance abuse liability in males and females (stronger in females) and with novelty seeking in females. There was no evidence of correlation between the genotypes of spouses that could be induced by assortative mating for the liability to substance abuse. The data suggest that the DRD5 locus is involved in the variation and sex dimorphism of substance abuse liability.

Adult↗

PubMed2001

Sequence polymorphisms of the EDA and the DL genes in the patients with an X-linked and an autosomal forms of anhidrotic ectodermal dysplasia.

Oligodontia, sparse hair and deficiency of eccrine sweat glands are the features characteristic for the phenotype of the patients with anhidrotic ectodermal dysplasia (EDA). This syndrome is caused by mutations in the EDA or DL (downless) genes, encoding members of the TNF ligand and TNF receptor families, involved in the communication between the cells during embryonic life. We investigated both the coding and noncoding regions of the EDA and the DL genes in the patients exhibiting clinical symptoms of ectodermal dysplasia. Sequence analysis of the amplified fragments of the EDA gene revealed polymorphisms in introns three, four and five. The polymorphism in intron four was found in about 60% of the patients and was no more frequent than in the normal individuals. The two other polymorphisms were rare. Polymorphisms were also observed in exons 9 and 12 of the DL gene, but they did not alter the sequence of the protein product of the gene. Our results indicate that in order to accelerate screening for the mutations of the EDA gene and reduce the costs, the amplified fragments should not contain intronic sequences. However, in the case of the DL gene, where polymorphic sites are located in exons, restriction analysis with the use of appropriate enzyme should be conducted, but usually sequencing analysis could not be avoided.

Ectodermal Dysplasia↗

PubMed2002

The meaning of mobility for residents and staff in long-term care facilities.

BACKGROUND: Although the physical and psychological effects of decreased mobility have been documented, little is known about what it means to be mobile from the institutionalized elders' perspective. Even less is known about nurses' perceptions regarding institutionalized elders' mobility and about mobility enhancing strategies. AIM: The purpose of this study was to generate knowledge about the phenomenon of mobility from both the nurses' and institutionalized elders' perspective. DESIGN: An exploratory qualitative design was used. Focus groups with residents and nursing staff were conducted in three long-term care facilities in a large metropolitan city in 1998. Ethical approval was received from the ethics committees in all three facilities prior to study implementation. Twenty long-term care facility residents and 15 nursing staff participated in the study. METHODS: A trained facilitator used an interview guide to moderate discussions in which residents' and nurses' opinions and feelings about mobility were solicited. The group responses were tape recorded, transcribed and coded. The codes reflected major concepts or abstractions of the data and emerged from the participants' verbal responses to the research questions. FINDINGS: Both groups identified mobility as being pivotal to the residents' quality of life and well-being. The residents viewed mobility as a means of freedom, choice and independence, and they made great efforts to maintain their mobility. The nurses also valued the importance of mobility and assisted the residents through preparatory care, environmental modifications and encouragement. Factors that related to the residents' willingness to be mobile, environmental barriers and the impact of waiting were compared between the two groups. CONCLUSION: Mobility involves more than the movement from one point to another. The nature of the assistive nurse-client relationship and the resident's subjective perspective must become central to understanding the meaning of mobility for residents in a long-term care facility.

Activities of Daily Living↗

PubMed2002

Environmental, policy, and cultural factors related to physical activity in a diverse sample of women: The Women's Cardiovascular Health Network Project--summary and discussion.

Ethnic minority and low-income populations have the highest rates of cardiovascular disease and the lowest rates of leisure-time physical activity. Because physical activity reduces the risk of premature death and disability from cardiovascular disease, researching correlates to such activity in these populations is an important aspect of health promotion in the US. To identify environmental, policy, and cultural barriers to physical activity in women, The Women's Cardiovascular Health Network Project conducted focus groups with White, African American, Latina, and American Indian women aged 20-50 years. The focus groups were audiotaped, transcribed, and analyzed with QSR NUD*IST qualitative software using a set of codes developed a priori by the research team. Family priorities were a main barrier to physical activity in all the groups. Having multiple roles as wife, mother, daughter, and as an active community member was mentioned as time-consuming and difficult, leaving little time or energy for exercise. Cultural barriers, which varied among the groups, included acculturation issues, lack of community support, and lack of past experience with exercise. Physical activity interventions suggested involved work programs, family-friendly programs, increased social support, and the availability of safer places to exercise such as parks, well-lit walking trails, and recreation centers. Many of the barriers were common to all groups (e.g., family priority) while some were unique (e.g., lack of community support). Assessing and addressing the issues raised should be considered when planning physical activity-interventions for these populations.

Adult↗

PubMed1998

Suggestions for a framework for an empirically based classification of personality disorder.

BACKGROUND: The classification of personality disorder is one of the least satisfactory sections of contemporary psychiatric classification. Fundamental problems with current classifications include extensive diagnostic overlap, limited evidence of validity, and poor empirical support. METHODS: Conceptual analysis and the results of empirical studies are used to propose a framework for organizing an empirically based classification. RESULTS: First, personality disorder is a form of mental disorder and, therefore, should be classified as a single diagnostic entity on Axis I along with other mental disorders. A preliminary definition of personality disorder as a tripartite failure involving the self system, kinship relationships, and societal relationships is proposed. The evidence suggests that this definition can be translated into a reliable set of items. Second, the diagnosis of personality disorder should be separated from the assessment of clinically relevant personality traits. Given the consistent evidential support for a dimensional model of personality disorder, it is suggested that personality be coded on a set of trait dimensions selected to provide a systematic representation of the domain of behaviours represented by current diagnostic concepts. Third, given that personality traits are hierarchically organized, it is suggested that an axis for coding personality include basic or lower-order dimensions as the primary level of assessment and a few higher-order patterns to summarize information for some purposes. CONCLUSION: A preliminary list of 16 basic dispositional traits is proposed to describe the more specific components of personality disorder based, in part, on the convergence of evidence across studies: anxiousness, affective lability, callousness, cognitive dysregulation, compulsivity, conduct problems, insecure attachment, intimacy avoidance, narcissism, oppositionality, rejection, restricted expression, social avoidance, stimulus seeking, submissiveness, and suspiciousness. Three higher-order patterns were proposed: emotional dysregulation, dissocial behaviour, and inhibitedness, which may occur independently or in combination.

Diagnosis, Differential↗

PubMed2001

Organization of the human IMPG2 gene and its evaluation as a candidate gene in age-related macular degeneration and other retinal degenerative disorders.

PURPOSE: To characterize the genomic organization of human IMPG2, the gene encoding the retinal interphotoreceptor matrix (IPM) proteoglycan IPM 200, to evaluate its relationship to IPM 150, and to evaluate its involvement in inherited retinopathies, such as age-related macular degeneration, retinitis pigmentosa, and Leber congenital amaurosis. METHODS: After isolation of human genomic clones, the structure of IMPG2 was determined by sequence analysis. Mutational analyses were conducted on genomic DNA isolated from 316 probands using single-strand conformation polymorphism analysis. RESULTS: The IMPG2 gene is organized into 19 exons, and the structure of the gene is highly similar to that of the IMPG1 gene, which encodes another retinal proteoglycan, IPM 150. Mutational analyses indicate that the observed sequence changes are present at approximately equal rates in donors with and without retinal disease. Additional data derived from RT-PCR and Northern blot analysis show that IMPG2 is processed in the human retina into multiple alternatively sized transcripts that may represent splicing isoforms. CONCLUSIONS: Analysis of the overall relationship of human IMPG2 (located on chromosome 3q12.2-12.3) to human IMPG1 (located on chromosome 6q14) suggests that these genes have evolved from a common ancestral gene. Although this is an excellent candidate gene for hereditary retinopathies, single-strand conformation polymorphism analyses provided no evidence that variations in IMPG2 coding region are responsible for the inherited retinopathies examined.

Aged↗

PubMed2002

Analysis on the association of human BLYS (BAFF, TNFSF13B) polymorphisms with systemic lupus erythematosus and rheumatoid arthritis.

Recent studies indicated a substantial role of BLyS (BAFF, TNFSF13B) in the pathogenesis of systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA) in humans and in animal models. This study was conducted to screen for polymorphisms of human BLYS, and to examine whether they are involved in the genetic susceptibility to human SLE and RA. A systematic polymorphism screening was performed in the coding region, 5' and 3' untranslated regions, and promoter region of human BLYS. Association of the detected polymorphisms with SLE and RA was analyzed in 221 Japanese patients with RA, 156 with SLE, and 227 healthy individuals, using the case-control approach. Four single nucleotide polymorphisms (SNPs) in the promoter, one SNP in intron 1, and one rare nonsynonymous substitution (Ala105Thr) in the coding region were detected. The BLYS SNPs were found to form three common haplotypes. Significant association with the susceptibility to SLE or RA was not observed. However, a tendency for the increase of -871T/T genotype was observed in SLE patients with anti-Sm antibody (P=0.082). BLYS mRNA level was significantly elevated in the monocytes from individuals carrying -871T (P=0.010). In addition, although statistically not significant, 105Thr allele was slightly increased in patients with RA compared with controls (P=0.058). Characterizing the functional and clinical significance of these new SNPs requires further study.

Adult↗

PubMed1994

A 32-bp deletion (2991del32) in the cystic fibrosis gene associated with CFTR mRNA reduction.

Cystic fibrosis, a common recessive disorder of exocrine glands, is caused by mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene. We describe the identification of a 32-bp deletion within the coding region of CFTR that involves the nucleotides 2991-3022 in exon 15 (2991del32). This unusual frameshift mutation was confirmed in three unrelated German families, accounting for a frequency of 0.3% in 1,028 CF chromosomes. All identified patients are compound heterozygotes for 2991del32 and for the most frequent cystic fibrosis mutation, delta F508. The evaluation of clinical data revealed typical symptoms of cystic fibrosis, including pancreatic insufficiency, in all three index cases. To characterize further the mutation in the CFTR transcript, we analysed RNA from lymphocytes by reverse transcription and PCR amplification. 2991del32 transcripts were detectable neither in the RNA sample from a patient compound heterozygous delta F508/2991del32 nor in the parental sample heterozygous wild-type/2991del32. These data indicate that the 32-bp deletion causes a pancreas insufficient cystic fibrosis phenotype by a severe reduction of CFTR mRNA.

Adolescent↗